In light of the law passed in SD restricting abortion further, a pro-choice activist is giving medical instructions for those wishing to preform clandestine abortion procedures:
"For under $2000, any person with the inclination to learn could create a fully functioning abortion setup allowing for both vacuum aspiration and dilation/curettage abortions. If you are careful and diligent, and have a good grasp of a woman's anatomy you will not put anyone's health or life in danger, even if you have not seen one of these procedures performed."
It's frightening that she intends this information to be used not by trained medical professionals, but by untrained laypeople. The knowledge and the surgical skills needed to safely preform medical procedures aren't a hobby that can be learned overnight by an amature like backyard gardening or pottery. It takes years of intensive study and practice to become a skilled and qualified physician or physician's assistant I hate to say it, but with the number of trained medical professionals sympathetic to the pro-choice cause, why should we be encouraging untrained persons to preform abortions? Previous to Roe v. Wade, theraputic abortions were legally permitted to be preformed in hospitals when the woman's life was in danger and the majority of elective abortions were preformed by trained medical professionals in good standing, so why would that likely change?
Update:
It seems that the blog in question is no longer in existance and the blogmistress is taking a hiatus as of April 2007, however a re-print of the entry can be found here and here. If you visit either blog, while you may strongly disagree with them as I have, I ask that you don't engage in slander or threats, as it does not show good will on pro-lifers part. Also of interest, an interview by Bella Online with the blogmistress, Molly, can be found here.
My Life in Reflection
Wednesday, March 8, 2006
Monday, February 13, 2006
Marie Claire Magazine Writing on CPCs
I found this comment from a visitor to Abortion Clinic Days
Also See my Article:
A Consumer's Guide to "Anti-Abortion Counseling Centers"
Update:
Ms. O'Connor has requested that I remove her e-mail address and I'm honoring her request. But in the meanwhile, feel free to continue to comment here or at Dawn Eden's blog. The English version of the magazine can be found at IVillage: Marie Claire Magazine and while I was unable to find Ms. O'Connor's business contact information, contacts for the magazine are:
Talk to Us!
MyMCLife@hearst.com
Editorial Offices
1790 Broadway
3rd Floor
New York, NY 10019
(212)-649-5000
Customer Service Department, Marie Claire
P.O. Box 7404
Red Oak, Iowa 51591
Toll-free Number: 1-800-777-3287
Second Update, Other Blogs Takes on This:
Fair, Balanced, Unbiased Reporter Seeks Info on Evil, No-Good, Very-Bad Pregnancy Centers
by Dawn Eden of The Dawn Patrol
Marie Claire: Making up the news--as long as it supports the pro-abort position
by Jacquefromtexas
You Can't Top Dawn Eden on Headlines
by JivinJehoshaphat
Marie Claire Magazine Writing on CPCs
by Christina of Real Choice
Third Update:
Jivin' J gives us an update in Unbiased reporter redux:
Fourth Update:
Dawn Eden of the Dawn Patrol gives us an update in 'Meet the Interloper'
Fifth and Final Update:
It appears that this article was called off and never published. However, in August of 2006, another article on abortion was pusblished in the UK issue of Marie Claire, titled, "I had an abortion". The article focuses on the stories of 12 women who have had an abortion and are each pictured wearing a t-shirt bearing the same slogan (‘I had an abortion’) / The article coincides with a recently supported abortion rights event in the House of Commons which called for women to “Speak out and break the silence on abortion...”. It is also worth noting that within the Advice section at the bottom of the page, the contact details of Abortion Rights plus 2 abortion providers (BPAS and Marie Stopes International) are given. There is no reference to a pro-life or other such organizations.
http://www.marieclaire.co.uk/reports/I_had_an_abortion_article_88600.html
H/T to The Lady in the Pew
Original Comments Made for This Entry:
Christina wrote:
This really gets me. Why is it so much worse to be annoyed by prolifers than killed by prochoicers? Why is it that as long as the baby dies, it's a happy ending, even if mom dies, too, but if the baby lives, it's a heinous crime against humanity, no matter how happy mom is about it?
Of all the things abortion advocates do, this is the one that angers me the most. It shows so clearly what their priorities are, and how little women's well-being -- or even women's real -- matters.
Siobhan O'Connor wrote:
Hi there I am writing a balanced piece represending both sides of the equation--best not to assume what the piece is about befor it's out though I can see how the language might be misleading. Thanks for all the emails, but please now remove my email address from your website. I will check back for posts! Thanks
Rachael wrote:
Ms. O'Connor,
Thank you for stopping by. I have a feeling you only say this to appease us. I find your claim that you're writing a balanced story doubtable considering you publicly asked for only negative stories and the language you used strongly implies that it's going to be anything but balanced. Well, we'll see, but I'm not holding my breath.
Christina wrote:
Ms. O'Connor,
I have to agree with Rachael that due to the tone of your request, and where you went looking for input, that we're not holding our breath waiting for a balanced piece.
I'd suggest comparing dissatisfied customers of both CPCs and abortion facilities. I can refer you to Marla Cardamone's mom. Marla was browbeaten into an unwanted abortion at Magee Women's Hospital. Marla's abortion was botched, and she was left virtually unattended to die. I can also put you in touch with Kay Stile, whose daughter, Christi, was left in a vegetative state after her safe and legal abortion. I can refer you to Angele, who gave birth to a live, doomed, premature baby in an abortion clinic toilet. You can also go here to learn Ashli's dissatisfied-customer story:
http://thesiclecell.blogspot.com/
See which side gets the worse worst-case scenario when they're misled and mistreated.
Paula wrote:
Hello Ms. O'Connor You stated that you are "writing a balanced piece represending both sides of the equation".
Have you also taken time to request information from people who have had positive experiences with CPCs? If so, what sort of groups have you made this request with?
Thank you ahead for your response.
p.s. if indeed you produce a fair and unbiased piece, it will be very refreshing, long overdue, and extremely beneficial to women. But frankly, I would doubt that with the nature of the magazine you represent, they will want to print it. I truly hope my opinion is incorrect, and I wish you well in your intent to be able to publish such a piece with Marie Claire magazine. I hope you are successful and honest.
Annie Banno wrote:
Dear Ms. O'Connor (since you said you'd be checking back here),
I'm not sure what Rachael's guidelines are but most bloggers will not print email correspondence or addresses only upon initial request. Since you appeared not to request that, you lost the right to keep your email offline here. Plus your request to remove it only after you began receiving emails from those who could truly give you a "balanced" accounting of CPCs, makes your motives and intentions suspect at best and unbalanced at worst.
If you want to be outraged at how CPCs have allegedly "deceived" any women, then be outraged at all the truth: and look at this list of women (complete with hotlinks to every single news item; http://realchoice.0catch.com/library/weekly/aa0214 06a.htm ) who've died because of going to CPCs versus those who died by going to legal abortion clinics for legal abortions. The list is made quite easy for you to do your "research" and "reporting", unless of course your only intent was and is to bury your head in the sand regarding these truths.
My email address is smok22andthensome@yahoo.com . Feel free to ask me for more balanced information as well.
Sincerely, Annie Banno
Naaman wrote:
In all fairness, I also like the abortionclinicdays blog, and I am extremely pro-life. Merely admiring a good blog (even if you passionately disagree with the bloggers) does not show any bias by itself.
However...
The fact that she's only looking for "women who have been deceived by CPCs" is much more troubling. As others have said, that's only one side of the story. For a truly-unbiased story, I hope that she is also looking for women who have been helped by CPCs. For extra credit, she can do some research into women who have been deceived by abortion clinics....
Rachael wrote:
Paula,
Elequently put and better said than I could. Thank you!
Annie,
I don't have a comment guideline on this particular issue (although my commenting guidelines can be found on my user information and I also mantain the Harris Protocol. I usually honor requests to maintain privacy, regardless of political stance. You make some good points, though. For those who are interested in contacting her, while her e-mail address is not provided here, her e-mail address can be found at any of the linked blogs, who've also written on this.
Naaman,
When weighing my opinion, I took into account both her applauding abortionclinicdays and her negativity towards CPCs.
And just a friendly reminder to the variety of pro-lifers out there, if you wish to write to Ms. O'Connor I encourage you to use respect and common curtesy. And please refrain from sending threatening or harassing letters, as this won't earn us any more respect or credibility.
Annie B. wrote:
Any new news on Siobhan's article? Is it out yet?
Rachael wrote:
Annie,
I just checked both March and April magazine issues here in the U.S. and it doesn't appear to be out yet. Also, if my readers in the UK could check their magazine issues over there too, that'd be great. The most recent update I have is the one from Jivin' J. Ms. O'Connor, If you are indeed still out there and reading this entry, what is the expected publication date or issue? We look forward to reading the magazine article.
Hi thereI don't know much about this magazine's affiliations, but the first thing I noticed is that the reporter applauds the work of the abortionclinicdays blog owners, two abortion providers, indicating that she's likely an advid supporter of "choice". The second thing I noticed is the language of the reporter's request, "I am looking to talk with women who have been deceived by CPCs." The language the reporter chose indicates that the focus on the CPCs is likely going to be a negative one. First of all, she only wrote to a strongly pro-choice blog, and second, if she was really writing a balanced story, she could of chosen different words, such as, "I'm looking for women's experienes at a CPC", thereby inviting all experiences. Not all places that we call CPCs operate in the way we think of CPCs. There are some out there that are not duplicitous and dishonest, and those which are, are largely in the minority. Mostly the issue pro-choicers take with CPCs is political/ideological, CPCs do not provide or refer for birth control or abortion services. Evenso, a number of CPCs have been cooperating with the law and have been providing valuable support services to thousands of women who've chosen alternatives to abortion. I encourage you check in to your local CPC and their services, consider donating (volunteer time, clothing, baby supplies, etc). And if any of you ladies out there have had a positive experience at a CPC, share your experience with the magazine reporter too!
I am a reporter for Marie Claire magazine working on a lengthy feature about "crisis pregnancy centers" and I love your site. I am looking to talk with women who have been deceived by CPCs. I am wondering if you can help. Of course I wouldn't expect you to divulge their identity to me, but if you could pass along my information, I would greatly appreciate it.
All the best
Siobhan O'Connor
Reporter, Marie Claire Magazine
Also See my Article:
A Consumer's Guide to "Anti-Abortion Counseling Centers"
Update:
Ms. O'Connor has requested that I remove her e-mail address and I'm honoring her request. But in the meanwhile, feel free to continue to comment here or at Dawn Eden's blog. The English version of the magazine can be found at IVillage: Marie Claire Magazine and while I was unable to find Ms. O'Connor's business contact information, contacts for the magazine are:
Talk to Us!
MyMCLife@hearst.com
Editorial Offices
1790 Broadway
3rd Floor
New York, NY 10019
(212)-649-5000
Customer Service Department, Marie Claire
P.O. Box 7404
Red Oak, Iowa 51591
Toll-free Number: 1-800-777-3287
Second Update, Other Blogs Takes on This:
Fair, Balanced, Unbiased Reporter Seeks Info on Evil, No-Good, Very-Bad Pregnancy Centers
by Dawn Eden of The Dawn Patrol
Marie Claire: Making up the news--as long as it supports the pro-abort position
by Jacquefromtexas
You Can't Top Dawn Eden on Headlines
by JivinJehoshaphat
Marie Claire Magazine Writing on CPCs
by Christina of Real Choice
Third Update:
Jivin' J gives us an update in Unbiased reporter redux:
Not only did Marie Claire reporter Siobhan O'Connor leave a message at the blog of an abortion provider looking 'for young women 18-35 who have been deceived by' crisis pregnancy centers, she also sent an e-mail to the National Network of Abortion Funds, which in turn sent the suggestion out to their e-mail list. One place their e-mail can be seen is under the topic "Fake Clinic Stories" at the Maggot Punks forum.
In addition, through Google, I've found that Ms. O'Connor has also sent her request to the pro-choice, abortion activism website I'm Not Sorry.
Christina of Real Choice in addition, has made an excellent suggestion:
Let's flood her with stories of women satisfied with the services they got at CPCs. She said she wanted to tell a "balanced story." So let's take her at her word. If you have experience with a prolife pregnancy center, send her your story at: [see Christina's entry for the e-mail address - Rachael]H/T to Jivin' J via After Abortion and Real Choice
Fourth Update:
Dawn Eden of the Dawn Patrol gives us an update in 'Meet the Interloper'
Turns out she found a willing participant in "iamnotanoctopus," whose real name appears to be Melissa*. Melissa's CPC "deception" didn't keep her from having at least two abortions, according to her blog — the most recent one last month [which was February - Rachael's note].
Fifth and Final Update:
It appears that this article was called off and never published. However, in August of 2006, another article on abortion was pusblished in the UK issue of Marie Claire, titled, "I had an abortion". The article focuses on the stories of 12 women who have had an abortion and are each pictured wearing a t-shirt bearing the same slogan (‘I had an abortion’) / The article coincides with a recently supported abortion rights event in the House of Commons which called for women to “Speak out and break the silence on abortion...”. It is also worth noting that within the Advice section at the bottom of the page, the contact details of Abortion Rights plus 2 abortion providers (BPAS and Marie Stopes International) are given. There is no reference to a pro-life or other such organizations.
http://www.marieclaire.co.uk/reports/I_had_an_abortion_article_88600.html
H/T to The Lady in the Pew
Original Comments Made for This Entry:
Christina wrote:
This really gets me. Why is it so much worse to be annoyed by prolifers than killed by prochoicers? Why is it that as long as the baby dies, it's a happy ending, even if mom dies, too, but if the baby lives, it's a heinous crime against humanity, no matter how happy mom is about it?
Of all the things abortion advocates do, this is the one that angers me the most. It shows so clearly what their priorities are, and how little women's well-being -- or even women's real -- matters.
Siobhan O'Connor wrote:
Hi there I am writing a balanced piece represending both sides of the equation--best not to assume what the piece is about befor it's out though I can see how the language might be misleading. Thanks for all the emails, but please now remove my email address from your website. I will check back for posts! Thanks
Rachael wrote:
Ms. O'Connor,
Thank you for stopping by. I have a feeling you only say this to appease us. I find your claim that you're writing a balanced story doubtable considering you publicly asked for only negative stories and the language you used strongly implies that it's going to be anything but balanced. Well, we'll see, but I'm not holding my breath.
Christina wrote:
Ms. O'Connor,
I have to agree with Rachael that due to the tone of your request, and where you went looking for input, that we're not holding our breath waiting for a balanced piece.
I'd suggest comparing dissatisfied customers of both CPCs and abortion facilities. I can refer you to Marla Cardamone's mom. Marla was browbeaten into an unwanted abortion at Magee Women's Hospital. Marla's abortion was botched, and she was left virtually unattended to die. I can also put you in touch with Kay Stile, whose daughter, Christi, was left in a vegetative state after her safe and legal abortion. I can refer you to Angele, who gave birth to a live, doomed, premature baby in an abortion clinic toilet. You can also go here to learn Ashli's dissatisfied-customer story:
http://thesiclecell.blogspot.com/
See which side gets the worse worst-case scenario when they're misled and mistreated.
Paula wrote:
Hello Ms. O'Connor You stated that you are "writing a balanced piece represending both sides of the equation".
Have you also taken time to request information from people who have had positive experiences with CPCs? If so, what sort of groups have you made this request with?
Thank you ahead for your response.
p.s. if indeed you produce a fair and unbiased piece, it will be very refreshing, long overdue, and extremely beneficial to women. But frankly, I would doubt that with the nature of the magazine you represent, they will want to print it. I truly hope my opinion is incorrect, and I wish you well in your intent to be able to publish such a piece with Marie Claire magazine. I hope you are successful and honest.
Annie Banno wrote:
Dear Ms. O'Connor (since you said you'd be checking back here),
I'm not sure what Rachael's guidelines are but most bloggers will not print email correspondence or addresses only upon initial request. Since you appeared not to request that, you lost the right to keep your email offline here. Plus your request to remove it only after you began receiving emails from those who could truly give you a "balanced" accounting of CPCs, makes your motives and intentions suspect at best and unbalanced at worst.
If you want to be outraged at how CPCs have allegedly "deceived" any women, then be outraged at all the truth: and look at this list of women (complete with hotlinks to every single news item; http://realchoice.0catch.com/library/weekly/aa0214 06a.htm ) who've died because of going to CPCs versus those who died by going to legal abortion clinics for legal abortions. The list is made quite easy for you to do your "research" and "reporting", unless of course your only intent was and is to bury your head in the sand regarding these truths.
My email address is smok22andthensome@yahoo.com . Feel free to ask me for more balanced information as well.
Sincerely, Annie Banno
Naaman wrote:
In all fairness, I also like the abortionclinicdays blog, and I am extremely pro-life. Merely admiring a good blog (even if you passionately disagree with the bloggers) does not show any bias by itself.
However...
The fact that she's only looking for "women who have been deceived by CPCs" is much more troubling. As others have said, that's only one side of the story. For a truly-unbiased story, I hope that she is also looking for women who have been helped by CPCs. For extra credit, she can do some research into women who have been deceived by abortion clinics....
Rachael wrote:
Paula,
Elequently put and better said than I could. Thank you!
Annie,
I don't have a comment guideline on this particular issue (although my commenting guidelines can be found on my user information and I also mantain the Harris Protocol. I usually honor requests to maintain privacy, regardless of political stance. You make some good points, though. For those who are interested in contacting her, while her e-mail address is not provided here, her e-mail address can be found at any of the linked blogs, who've also written on this.
Naaman,
When weighing my opinion, I took into account both her applauding abortionclinicdays and her negativity towards CPCs.
And just a friendly reminder to the variety of pro-lifers out there, if you wish to write to Ms. O'Connor I encourage you to use respect and common curtesy. And please refrain from sending threatening or harassing letters, as this won't earn us any more respect or credibility.
Annie B. wrote:
Any new news on Siobhan's article? Is it out yet?
Rachael wrote:
Annie,
I just checked both March and April magazine issues here in the U.S. and it doesn't appear to be out yet. Also, if my readers in the UK could check their magazine issues over there too, that'd be great. The most recent update I have is the one from Jivin' J. Ms. O'Connor, If you are indeed still out there and reading this entry, what is the expected publication date or issue? We look forward to reading the magazine article.
Sunday, February 5, 2006
March for Life and Superbowl
I'm a little slow on the Sanctity of Human Life Sunday and the annual March for Life coverage due to personal circumstances. After Abortion has rounded up posts covering the March for Life 2 weeks ago. Their posts features both their own experiences and views and share others blogs coverage.
Here in the U.S. it's the 40th annual Superbowl football championship. And we're having a Superbowl Party. Well, I wouldn't call it a party as much as a get together. Just a carry-in with extended family. And my younger sister and her boyfriend came home from college for the weekend (yea!). I'm not sure who I'm rooting for since my favorite team, the Indianapolis Colts blew it in the play offs. We'll see :) I'll post some pics later.
Update:
The Pittsburgh Steelers won against the Seatle Seahawks in the Superbowl, 21 to 10. And I've posted pics of our Superbowl party at my Photobucket photo album.
Here in the U.S. it's the 40th annual Superbowl football championship. And we're having a Superbowl Party. Well, I wouldn't call it a party as much as a get together. Just a carry-in with extended family. And my younger sister and her boyfriend came home from college for the weekend (yea!). I'm not sure who I'm rooting for since my favorite team, the Indianapolis Colts blew it in the play offs. We'll see :) I'll post some pics later.
Update:
The Pittsburgh Steelers won against the Seatle Seahawks in the Superbowl, 21 to 10. And I've posted pics of our Superbowl party at my Photobucket photo album.
Wednesday, December 28, 2005
New Study Shows Drinking Tea May Reduce Risk of Developing Ovarian Cancer
A new study has found that tea-drinkers may reduce their risks of developing ovarian cancer by almost half.
The Karolinska Instutite conducted the study, revealing that middle-age women who drink two or more cups of green or black tea every day are likely to cut their chances of developing epithelial ovarian cancer by 46 percent. And each additional cup could lower the risk by another 18 percent.
While Dr. Susanna C. Larsson and her colleagues do admit that additional factors come into play, (ex. tea drinkers were also more prone to be more health conscious in general) the prevalence of the findings are too significant to simply dismiss. “The dose-reponse relationship for tea consumption with ovarian cancer risk makes chance less likely.” says Larsson.
Ovarian cancer is the fourth leading cause of cancer death for women in the U.S. Only 30 percent of women diagnosed with ovarian cancer survive beyond five years.
H/T to Vanessa at Feministing
http://feministing.com/archives/004698.html
Original Comments Made for This Entry:
CatS. wrote on 12-27-2006
Hi Rachael. Thank you for the good info. I suppose I should put my tea kettle to use more:)
The Karolinska Instutite conducted the study, revealing that middle-age women who drink two or more cups of green or black tea every day are likely to cut their chances of developing epithelial ovarian cancer by 46 percent. And each additional cup could lower the risk by another 18 percent.
While Dr. Susanna C. Larsson and her colleagues do admit that additional factors come into play, (ex. tea drinkers were also more prone to be more health conscious in general) the prevalence of the findings are too significant to simply dismiss. “The dose-reponse relationship for tea consumption with ovarian cancer risk makes chance less likely.” says Larsson.
Ovarian cancer is the fourth leading cause of cancer death for women in the U.S. Only 30 percent of women diagnosed with ovarian cancer survive beyond five years.
H/T to Vanessa at Feministing
http://feministing.com/archives/004698.html
Original Comments Made for This Entry:
CatS. wrote on 12-27-2006
Hi Rachael. Thank you for the good info. I suppose I should put my tea kettle to use more:)
Friday, December 23, 2005
Adverse Prenatal Diagnosis & Maternal Health Conditions Information and Support
It's not an easy time for you. You suspect that something's wrong with your pregnancy or baby, and maybe you've had a positive test, which only confirm your fears. Or perhaps you're here seeking out information and/or help for a friend or relative. Here you'll find a wealth of resources and information to educate, empower, and support you. Take a deep breath, try to relax, and then learn everything you can about your situation.
About Prenatal Testing and General Information:
American Pregnancy Association: Birth Defects
Education on diagnosis, prevention, causes, and treatment to help families manage birth defects.
http://americanpregnancy.org/birthdefects/index.htm
American Pregnancy Association: Prenatal Testing
http://www.americanpregnancy.org/prenataltesting/
StorkNet: Pregnancy Complications
http://www.storknet.com/complications/index.html
Association of Birth Defect Research for Children, Inc.
The Association of Birth Defect Children (ABDC) is a non-profit organization, started by parents in 1982, which provides information and support to parents of children with birth defects.
930 Woodcock Road
Suite 225
Orlando, FL 32803
Tel: 407-895-0802
800-313-ABDC (2232)
Fax: 407-895-0824
http://www.birthdefects.org/
Specific Disabilitities/Illness Information:
Absence of Corpus Callosum:
Agenesis of the Corpus Callosum means a complete or partial absence of the bridge between the left and right sides of the brain. In and of itself, the corpus callosum is not necessary for life or health, but conditions associated with ACC can lead to serious medical problems including abnormalities of cerebrospinal fluid or mental retardation. Some individuals will have mild symptoms while others may be severely restricted in their daily life. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with early educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
National Organization of Disorders of the Corpus Callosum
http://www.nodcc.org/
Amniotic Band Syndrome:
Amniotic Band Syndrome refers to abnormalities caused by fibrous strands that can entangle or confine developing parts of the fetus. These strands are believed to arise from membranes that form outside the placenta. Symptoms associated with Amniotic Band Syndrome include limb or skull abnormalities, cleft lip/palate, scoliosis, and other, more complex abnormalities. The treatment is supportive with physical therapy, occupational therapy, orthopedic instruments, and when necessary, surgery. Most individuals will have a normal lifespan.
Amniotic Band Syndrome
http://www.amnioticbandsyndrome.com/
Acardiac Twinning (TRAP):
Anencephaly, Encephalocele, Hydrocephaly, Spina Bifida, and Related Conditions:
Anencephaly is a type of neural tube defect (NTD). Babies with anencephaly have major portions of the brain, the skull, and the scalp missing. They usually have normal bodies and functioning organs. The child may be born stillborn or the presence of a brain stem may keep the organs operating for a period of time, and the child may live anywhere from days to weeks, however the condition is ultimately terminal.
Encephalocele is a birth defect that results in a hole in the skull through which brain tissue protrudes. Other abnormalities often occur with encephaloceles. These may include hydrocephalus (excessive fluid in the brain), mirocephaly (abnormally small head), paralysis of the arms and legs, seizures, developmental delays, mental and growth retardation, and/or vision problems. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with early educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
Hydrocephalus is an abnormal build up of cerebrospinal fluid (CSF) in the brain that causes ventricles to enlarge and the pressure inside the head to increase. Hydrocephalus occurs when there is an imbalance in the amount of CSF being produced and absorbed. Hydrocephalus is treated by surgically placing a shunt in the brain, which drains into the abdomen, where the excess fluid is then reasorbed. Most individuals with this condition will have a normal lifespan and lead normal lives.
Anencephaly Blessings from Above
A pro-life anencephaly support group. A christian forum to encourage and support families whose baby has been newly diagnosed; who are currently carrying a baby to term or have carried a baby to term; who are considering, in the midst of, or having experienced a subsequent pregnancy; and any others who have been touched by anencephaly - parents, relatives, professionals, or friends who wish to share their stories and support. This forum respects the sanctity of life from conception to natural death.
http://clubs.yahoo.com/clubs/anencephalyblessingsfromabove
Anencephaly Support Foundation
Non-profit support organization with information, personal stories, and resources for families, parents, and medical professionals.
asf@asfhelp.com
Tel: 888-206-7526
http://www.asfhelp.com/
Anencephaly-Info
A comprehensive website of of parents stories, medical information, support, and resources
http://www.anencephalie-info.org/index.php
Faith Hope
A diagnosis of anencephaly has not stopped this young single mom from embracing every day, every moment, of her child's life, who lived beyond birth with this condition. A wonderful story of hope and encouragement for other mothers experiencing this devastating diagnosis.
http://babyfaithhope.blogspot.com/
Hydrocephalus Organization
Non-profit support and advocacy group information on resources and education for families and individuals.
870 Market Street, Suite 705
San Francisco, CA 94102
Tel: (415) 732-7040 or toll-free (888) 598-3789
info@hydroassoc.org
http://www.hydroassoc.org/
Spina Bifida Association
Voluntary health agency dedicated to support, education, advocacy, research and service
4590 MacArthur Boulevard, NW
Washington , DC 20007
Phone: 202-944-3285
Toll Free: 800-621-3141
Fax: 202-944-3295
http://www.spinabifidaassociation.org/
Anophtalmia/Microphtalmia (absent or small eyes):
Anophtalmia means that one or both eyes didn’t form during the early stages of pregnancy. Congenital anophtalmia may occur alone or with other malformations. Microphthalmia means that the eye/s started to form during pregnancy but stopped, leaving the baby with eyes that are smaller than normal. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with correctional and supportive treatment of physical abnormalities.
International Children's Anophthalmia Network
http://www.anophthalmia.org/
Micro and Anophthalmic Children's Society
http://www.macs.org.uk/
Micropthalmia Group
http://groups.yahoo.com/group/Microphthalmia
Anorectal Malformations (imperforate anus, rectal atresia):
Anorectal malformations are a group of birth defects than involve the external opening of the anus preventing the normal passage of stool. The anal opening may be smaller than normal size; in an abnormal location or not visible upon examination. Imperforate anus is usually present along with other birth defects—spinal problems, heart problems, tracheoesophageal fistula, esophageal atresia, renal anomalies, and limb anomalies are among the possibilities. Treatment for anorectal malformations includes immediate surgery to open a passage for feces and for the other accompnying conditions treatment consists of supportive treatment with physical therapy, occupational therapy, orthopedic instruments, and when necessary, surgery..
The Pull-Thru Network
http://www.pullthrough.org/
Cincinnati Children's Hospital: Imperforate Anus / Anorectal Malformations
http://www.cincinnatichildrens.org/health/info/abdomen/diagnose/anorectal-malformations-imperforate-anus.htm
Cleft Lip and Cleft Palate:
An oral cleft is a split or separation in the baby’s lip and/or palate. Cleft lip means that the two sides of the upper lip did not grow together properly. Cleft palate is a split or opening in the roof of the mouth. The opening in the lip or palate may be unilateral, only on one side, or bilateral, on both sides. Cleft lip and palate can occur together or individually. Cleft lip and palate is very treatable; however, the kind of treatment depends on the type and severity of the cleft. Possible treatment options include speech therapy, prosthetics (to cover or to close the gap made by the cleft palate), lengthening of the palate, and surgical procedures. A cleft lip or palate can be successfully treated with surgery, especially so if conducted soon after birth or in early childhood, and the scar becomes less visible with age. Speech problems are usually treated by a speech-language pathologist.
American Cleft Palate-Craniofacial Association/Cleft Palate Foundation
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820
(919) 933-9044
http://www.cleftline.org/
Cleft Lip and Palate Association
First Floor Green Man Tower
332B Goswell Road
London EC1V 7LQ
http://www.clapa.com/
Chromosomal Abnormalities:
Trisomy 13 (Patau Syndrome)
Patau syndrome, also known as trisomy 13 and trisomy D, is a chromosomal abnormality, a syndrome in which a patient has an additional chromosome 13, which means each cell in the body has three copies of chromosome 13 instead of the usual two copies. Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient. Treatment of Patau syndrome focuses on the particular physical problems with which each child is born. Many infants have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects. Surgery may be necessary to repair heart defects or cleft lip and cleft palate. Physical, occupational, and speech therapy will help individuals with Patau syndrome reach their full developmental potential.
Trisomy 18 (Edwards Syndrome)
Trisomy 18 (T18) (also known as Trisomy E or Edwards syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. Only 50% of liveborn infants live to 2 months, and only 5–10% survive their first year of life. Major causes of death include apnea and heart abnormalities. However, it is impossible to predict the exact prognosis of a child with Edwards syndrome during pregnancy or the neonatal period. The median lifespan is 5–15 days. One percent of children born with this syndrome live to age 10, typically in less severe cases of the mosaic Edwards syndrome.
Trisomy 21 (Down Syndrome)
Down syndrome is “a developmental abnormality characterized by trisomy of human chromosome 21" Most individuals with Down syndrome have mental retardation in the mild (IQ 50–70) to moderate (IQ 35–50) range, with individuals having Mosaic Down syndrome typically 10–30 points higher. Cognitive development in children with Down syndrome is quite variable. It is not currently possible at birth to predict the capabilities of any individual reliably, nor are the number or appearance of physical features predictive of future ability. Due to the nature of prenatal screens, each has a significant chance of a false positive, suggesting a fetus with Down syndrome when, in fact, the fetus does not have this genetic abnormality. Screen positives must be verified before a Down syndrome diagnosis is made. Treatment for individuals with Down Syndrome is supportive and corrective and can help these individuals reach their full developmental potential, with early developmental/educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
99 Balloons
A video journal created by parents documenting the life of their son Elliot, who was born with Trisomy 18 and lived 99 days.
http://www.youtube.com/watch?v=th6Njr-qkq0
http://www.ninetynineballoons.com/
A Trisomy 18 Journey
Support website with information on Trisomy 18/Trisomy 13, personal stories, and resources for families, parents, and medical professionals.
http://www.geocities.com/wilsfordmindy/
Band of Angels
Offers outreach, education, and support to parents and families of children with Down Syndrome as well as awareness and education for the medical professionals and the general public.
http://www.bandofangels.com/
CDAC
Offers scientific research, information, education, and suuport to parents and families of children with Down Syndrome as well as awareness and education for the medical professionals and the general public. Written by parents of a child with Down Syndrome.
http://www.cdadc.com/ds/
Hidden Treasures: The Trisomy 21 Journey
Parents from all around the world, who would like to share their stories.
http://hiddentreasuresthet21journey.blogspot.com/
International Mosaic Down Syndrome Association
The International Mosaic Down Syndrome Association is designed to assist any family or individual whose life has been affected by mosaic Down syndrome
http://www.imdsa.org/
Living with Trisomy
Support for Trisomy Families
http://www.livingwithtrisomy.org/
Mosaic Down Syndrome
Karlee has mosaic Down Syndrome. Her site also contains a whole page of family stories of other mosaic Down Syndrome children from around the world complete with e-mail links.
http://www.mosaicdownsyndrome.com/index.htm
National Down Syndrome Society
Offers advocacy, outreach, education, and support and resources for families, parents, and medical professionals. Helpline: 1-800-221-4602
http://www.ndss.org/
Pathfinder Village
A place where persons with Down Syndrome can get the support and acceptance they need to live productive lives.
http://www.pathfindervillage.org/
Recommended Down Syndrome Sites on the Internet
Compiled by Len Leshin, M.D.
http://www.ds-health.com/ds_sites.htm
SOFT
Support Organization for Families of Trisomy, a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder and education to families and professionals interested in the care of these children.
http://www.soft.org/
Three Weddings
A journal created by a mother, documenting the joys and challenges of raising 3 daughters, including daughter "Peanut" who was born with Trisomy 21 (Down Syndrome). Also, under her Blogroll, you can find links to blogs of other parents with infants/children with Down Syndrome.
http://www.my3weddings.com/
Unique - Rare Chromosome Disorder Support Group (UK)
http://www.rarechromo.org/
Video: DOWN SYNDROME!? not MY baby!!
Information and support by a parent for other parents of a child newly diagnosed with Down Syndrome
http://www.youtube.com/watch?v=JmjLW0nLmzA
Video: Dreams
Dreams features children and adults who have Down syndrome talking about their dreams and what they're proud of in their lives. This fun and inspirational video made by Scott and Julia Elliott celebrates the work of the National Down Syndrome Society and the larger Down syndrome community.
http://www.youtube.com/watch?v=-_-P4t2jR1g
Video: Grace: A Story of a Family and Down Syndrome
http://www.youtube.com/watch?v=VNvayF6ASOo
Video: "My Wish"
A video made by a family about their son with Down Syndrome, Cole
http://www.youtube.com/watch?v=lMdeYGEKEp0
Chromosomal Abnormalities (Others):
Prader-Willi syndrome (deletion on chromosome 15)
Cri-du-chat (cat cry) syndrome (deletion on chromosome 5)
Wolf-Hirschhorn syndrome (deletion on chromosome 4)
DiGeorge syndrome also known as 22q11 deletion syndrome ( deletion on chromosome 22)
5P-Society
(Cat Cry Syndrome)
P.O. Box 268
Lakewood CA 90714
(888) 970-0777
http://www.fivepminus.org/
Chromosome Deletion Outreach
P.O. Box 724
Boca Raton FL 33429
(561) 395-4252
http://www.chromodisorder.org/CDO/
Genetic and Rare Conditions Site
Medical Genetics, University of Kansas Medical Center
Lay advocacy and support groups, information on a wide variety of genetic conditions/birth defects for professionals, educators, and individuals.
http://www.kumc.edu/gec/support
The National Organization for Rare Disorders (NORD)
55 Kenosia Ave.
P.O. Box 1968
Danbury CT 06813
Tel: 1-800-999-6673
http://www.rarediseases.org/
Prader-Willi Syndrome Association
5700 Midnight Pass Rd., Suite 6
Sarasota FL 34242
(800) 926-4797
http://www.pwsausa.org/
Dandy-Walker syndrome (DWS)
Treatment for individuals with Dandy-Walker syndrome generally consists of treating the associated problems, if needed. A special tube (shunt) to reduce intracranial pressure may be placed inside the skull to control swelling. Treatment may also consist of various therapies such as occupational therapy, physical therapy, speech therapy or specialized education. Services of a vision teacher may be helpful if the eyes are affected.
Abbygail Marie
A mother and child's journey with Dandy-Walker syndrome
http://www.abbygailmarie.blogspot.com/
Ehlers-Danlos Syndrome (EDS) (also known as "Cutis hyperelastica"):
EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). There is no known cure for Ehlers Danlos Syndrome. The outlook for individuals with EDS depends on the type of EDS with which they have been diagnosed. Symptoms vary in severity, even within one sub-type, and the frequency of complications changes on an individual basis. Some individuals have mild symptoms while others are severely restricted in their daily life. The treatment is supportive with physical therapy, occupational therapy, nutritional, orthopedic instruments, and when necessary, surgery. Most individuals will have a normal lifespan.
Fetal Lower Urinary Tract Obstruction (LUTO):
Fragile X Syndrome (Martin-Bell syndrome):
Characteristics of the syndrome include intellectual disability, an elongated face, large or protruding ears, flat feet, larger testicles in men (macroorchidism), low muscle tone. Speech may include cluttered speech or nervous speech. Behavioral characteristics may include stereotypic movements (e.g., hand-flapping) and atypical social development, particularly shyness, limited eye contact, memory problems, and difficulty with face encoding, and some individuals with the fragile X syndrome also meet the diagnostic criteria for autism. Currently, the syndrome can be treated through behavioral therapy, special education, medication, and when necessary, correctional and supportive treatment of physical abnormalities
Heart Malformations and Defects:
A congenital heart defect is any abnormality of the heart’s structure or function. The following are a fee of the most common types:
Hypoplasia: Hypoplasia can affect the heart, which typically results in the failure of either the right ventricle or the left ventricle to develop adequately, leaving only one side of the heart capable of pumping blood to the body and lungs.
Septal Wall Defects: The septum is a wall of tissue which separates the left heart from the right heart. It is comparatively common for defects to exist in the interatrial septum or the interventricular septum, allowing blood to flow from the left side of the heart to the right, reducing the heart's efficiency.
Cyanotic Defects: Cyanotic heart defects are called such because they result in cyanosis, a bluish-grey discoloration of the skin due to a lack of oxygen in the body. Such defects include persistent truncus arteriosus, total anomalous pulmonary venous connection, tetralogy of Fallot, transposition of the great vessels, and tricuspid atresia.
Sometimes congenital heart defects improve with no treatment necessary. At other times the defect is so small, it does not require any treatment. Most of the time congenital heart defects are serious and are treatable with surgical repairs in infancy or childhood and/or medications. Interventional cardiology now offers patients minimally invasive alternatives to surgery.
Congenital Heart Information Network
information, support services, financial assistance and resources
http://tchin.org/
PediHeart:
Information, support, and resources for parents and medical professionals
http://www.pediheart.org/index.html
Little Hearts
Support for parents of children with heart defects
http://www.littlehearts.net/
Limb Abnormalities:
The Clubfoot Club
http://www.clubfootclub.org/
E-Hand.com (Electric Handbook of Hand Surgery): Syndactyly
Information on the condition as well as treatment and therapy options.
http://www.eatonhand.com/hw/hw019.htm
E-Hand.com (Electric Handbook of Hand Surgery): Polydactyly
Information on the condition as well as treatment and therapy options.
http://www.eatonhand.com/hw/hw024.htm
Helping Hands Foundation
A not-for-profit support group made up of parents who have children with upper limb differences.
http://www.helpinghandsgroup.org/
Reach
This UK group gives support and advice to families with children with a hand or arm deficiency.
http://www.reach.org.uk/
Super Hands Network
Hope and encouragement for kids with upper limb differences
http://www.superhands.us/
Polycystic Kidney Disease/
PKD Foundation
The PKD Foundation is the only organization, worldwide, dedicated to promoting research to find a cure for polycystic kidney disease (PKD) and improving the care and treatment of those it affects.
http://www.pkdcure.org/
Potter's Syndrome/Renal Agenesis
Potter's Syndrome Website
Whether your a family whose baby has just been diagnosed with Potter's Syndrome (Renal Agenesis, Potter's Sequence) or a family member or friend, or even someone who already has lost a baby to Potter's Syndrome and is looking for answers, this website was made for you.
http://www.potterssyndrome.org/
Selective Intrauterine Growth Restriction (SIUGR)
Thanatophoric Dysplasia
Thanatophoric dysplasia is a severe skeletal disorder characterized by extremely short limbs and folds of extra skin on the arms and legs. Children with this condition are usually stillborn or die shortly after birth from respiratory failure. Those who make it to birth will have difficulty breathing on their own and will require respiratory support such as high flow oxygen through a canula or ventilator support via tracheostomy.
Turner Syndrome
Turner syndrome or Ullrich-Turner syndrome (also known as "Gonadal dysgenesis") encompasses several conditions, of which the absence of the X sex chromosome is most common. It is a chromosomal abnormality in which all or part of one of the X sex chromosomes is absent.
Turner Syndrome Society of the US
The Turner Syndrome Society of the United States creates awareness, promotes research, and provides support for all persons touched by Turner Syndrome.
http://www.turnersyndrome.org/
Twin to Twin Transfusion Syndrome
Twin to Twin Transfusion Syndrome Foundation
information, the various treatments available, complications of multiple pregnancy, valuable support
http://www.tttsfoundation.org/
Ventriculomegaly
Ventriculomegaly is a brain condition that occurs when the lateral ventricles become dilated. The most common definition uses a width of the atrium of the lateral ventricle of greater than 10 mm.
UCSF Fetal Treatment Center: Ventriculomegaly
http://fetus.ucsfmedicalcenter.org/ventriculomegaly/
Maternal Health Conditions:
Diabetes and Pregnancy (from the American Diabetes Association
"Health care providers no longer discourage women with diabetes from becoming pregnant. We now know that the key to a healthy pregnancy for a woman with diabetes is keeping blood glucose (sugar) in the target range -- both before she is pregnant and during her pregnancy. To do this, you need a diabetes treatment plan that keeps meals, exercise, and insulin in balance. This plan will change as you change with pregnancy. You will also need to check your blood glucose often and keep a record of your results. With your blood glucose in the target range and good medical care, your chances of a trouble-free pregnancy and a healthy baby are almost as good as they are for a woman without diabetes."
http://www.diabetes.org/gestational-diabetes/pregancy.jsp
Hyperemesis Gravidarum
An entry I've created for awareness about HG with links to information sites, organizations and support boards.
http://mylifeinreflection.blogspot.com/2005/07/hyperemesis-gravidarum-its-beyond.html
Preeclampsia Foundation
http://www.preeclampsia.org/
Pregnant With Cancer
Information, resources, support, and hope
http://www.pregnantwithcancer.org/
Study Finds Abortion Not Needed When Pregnant Women Face Cancer Treatment
Dr. Beth Beadle, who works at the prestigious medical center and is the lead author of the study, told AP that both mother and baby can be cared for during treatment.
Ruth O'Regan, an associate professor at Emory University's Winship Cancer Institute in Atlanta, also told AP that cancer doctors can treat both mother and child without the need for an abortion.
http://www.ajc.com/i/content/health/stories/2009/02/09/breast_cancer_pregnancy.html
Continuing a Pregnancy After an Adverse Prenatal Diagnosis:
A Child of Promise
A ministry of the First Evangelical Free Church, A Child of Promise is a support group aimed at encouraging families to continue their pregnancy following an adverse pregnancy diagnosis. They currently provide individual counseling, and would like to eventually provide a monthly or bi-monthly support group meetings as they have enough families. A Child of Promis is a Christian organization, but is open to those of all faiths and to both mothers and fathers.
1375 Carman Rd.
Manchester, MO 6301
Tel: 636-227-0125
http://www.achildofpromise.org/
Abiding Hearts
A support system for parents continuing pregnancy after prenatal diagnosis of fatal (or non-fatal) birth defects; unplanned pregnancies included. Also a newsletter for parents who choose to carry a baby with a genetic defect to term. A $5 donation is requested to help defray mailing costs.
P.O. Box 904
Libby, MT 59923
Tel: 406-293-4416
Fax: 406-587-7197
Alexandra's House
A Charitable Perinatal Hospice and Infant Refuge, founded and located in Kansas City, Missouri, serving families across the United States of America. Their mission is to give hope, comfort, and meaning to suffering families and their very special babies. These are babies that are expected to die at or shortly after birth, but their parents make the heroic decision to carry their babies to term, in spite of its desperate outcome.
http://www.alexandrashouse.com/
American Association of Pro Life Obstetricians and Gynecologists
Provides referrals to medical doctors who are willing to provide care to women carrying a high risk pregnancy or adverse prenatal diagnosis to term.
http://www.aaplog.org/
Be Not Afraid
Be Not Afraid is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within BeNotAfraid.net are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The BeNotAfraid.net families faced the same decision and chose not to terminate. By sharing their experiences, they hope to offer encouragement to those who may be afraid to continue on.
http://www.benotafraid.net/
Carrying to Term Pages
After a devastating prenatal diagnosis, it's too often assumed that a mother will automatically terminate the pregnancy. This website was designed for those who are determined to carry their unborn child to term despite the child's fatal condition. While many tips come from personal experience, this site actively solicits tips from other mothers and fathers who have been there.
http://www.geocities.com/tabris02/index.html
High Risk Moms
A support group for and quarterly newsletter for those experiencing problem pregnancies. They provide perinatal telephone contact with moms who have experienced similar situations.
P.O. Box 389165
Chicago, IL 60638-9165
Tel: 708-515-5453
Miracle Angels Support Group
An email support group for parents who choose to continue their pregnancy after recieving a devastating prenatal diagnosis, whether or not the prognosis is fatal.
http://health.groups.yahoo.com/group/MiracleAngels/
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis
A well-researched yet easily understandable, positive guide when you need to make sense out of what seems to be senseless.
http://mychildmygift.com/
National Challenged Homeschoolers Associated Network
Christian Families Homeschooling Special Needs Children
http://www.nathhan.com/
Poor Prenatal Diagnosis Advice And Support
Information on treatment options, where to go for Information/Support/Resources, referrals for Fetal Treament facilities- prenatal corrective surgery, and stories from parents of a child with a condition.
http://www.geocities.com/pregnancyhelpnow/termination_for_medical_reasons.html
Prenatal Hospice: A Gift of Time
Compassionate support and resources for parents who have chosen to carry to term.
http://www.perinatalhospice.org/
Prenatal Partners for Life: Support, Information, and Encouragement
Prenatal Partners for Life is a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. We offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis.
http://www.prenatalpartnersforlife.org/pages/1/index.htm
Sidelines National Support Network
P.O. Box 1808 s
Laguna Beach, CA 92652
Tel: 1-888-447-4754.
A national network of volunteers offering support, education, advocacy and resources to families dealing with high-risk pregnancies. They publish a magazine, LeftSide Lines. To request support or information, or to order the magazine, call the above toll-free number.
http://www.sidelines.org/
String of Pearls
String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The path between grief and hope is a difficult place to walk; our desire is to provide guidance, compassion and practical suggestions as plans to honor the life of pre-born babies are crafted. Each life has a story worthy of telling and we are here for support as stories are lovingly written.
http://stringofpearlsonline.org/
Waiting with Love
For parents who choose to continue a pregnancy knowing their unborn baby will die before or shortly after birth and for families who learn their newborn will die
http://www.erichad.com/wwl/
Waiting With Love Multiple Pregnancy - Knowing Ahead
A checklist for families who are expecting multiples and know that one or more of the babies will not survive. Includes things you can do before birth and to prepare for birth and afterward.
http://www.erichad.com/wwl/twinsck.htm
Welcoming Babies with Down Syndrome
Information and support for parents who choose to carry their baby to term after a Down Syndrome diagnosis.
http://www.babycenter.com/0_welcoming-babies-with-down-syndrome_1817.bc
Welcoming Babies with Spina Bifida/Hydrocephalus
Information and support for parents who choose to carry their baby to term after a Spina Bifida/Hydrocephalus diagnosis.
http://www.waisman.wisc.edu/~rowley/sb-kids/wbwsb.html
Memorials and Healing for Loss:
A Place to Remember
This site offers information and support for those who have been faced with a crisis during pregnancy or the death of a baby. There is also an on-line bookstore with many books that might be helpful to families.
http://www.aplacetoremember.com/
Mommies Enduring Neonatal Death
M.E.N.D. (Mommies Enduring Neonatal Death) is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death.
http://www.mend.org/
Mothers in Sympathy and Support
This website provides support to families after the death of their baby or young child in the form of confrences, an online memorial, and healing resources.
http://www.misschildren.org/
"Now I Lay Me Down to Sleep"
When a baby or infant has died, Now I Lay Me Down to Sleep, through its nationwide network of professional photographers, will arrange a tasteful private sitting at the hospital with no charge for any services or pictures.
http://www.nowilaymedowntosleep.org/
Remembered Forever
This site was created to allow grieving users to build personalized memorials dedicated to their loved ones. The site was created after a sudden loss in the family, and Ian McIntosh and his whole family found it an excellent way of not only easing the grief process, but celebrating the life of a family member. Memorialization is important to families, and via the Remembered Forever site, it is unique in that it allows all members of the family to place their thoughts, memories, and condolences in one place.
http://www.remembered-forever.org/
SHARE Pregnancy and Infant Loss Support
SHARE's mission is to serve those who are touched by the tragic death of a baby through miscarriage, stillbirth, or newborn death.
http://www.nationalshareoffice.com/
For a Full Listing of Websites and Resources for Genetic Disorders try Genetic and Rare Conditions Site
This List of Websites for Poor Prenatal DX
Resources found through:
Google Search - poor prenatal diagnosis
Prenatal Diagnosis/Prognosis Support
University of Wisconsin-Madison Family Village
About Prenatal Testing and General Information:
American Pregnancy Association: Birth Defects
Education on diagnosis, prevention, causes, and treatment to help families manage birth defects.
http://americanpregnancy.org/birthdefects/index.htm
American Pregnancy Association: Prenatal Testing
http://www.americanpregnancy.org/prenataltesting/
StorkNet: Pregnancy Complications
http://www.storknet.com/complications/index.html
Association of Birth Defect Research for Children, Inc.
The Association of Birth Defect Children (ABDC) is a non-profit organization, started by parents in 1982, which provides information and support to parents of children with birth defects.
930 Woodcock Road
Suite 225
Orlando, FL 32803
Tel: 407-895-0802
800-313-ABDC (2232)
Fax: 407-895-0824
http://www.birthdefects.org/
Specific Disabilitities/Illness Information:
Absence of Corpus Callosum:
Agenesis of the Corpus Callosum means a complete or partial absence of the bridge between the left and right sides of the brain. In and of itself, the corpus callosum is not necessary for life or health, but conditions associated with ACC can lead to serious medical problems including abnormalities of cerebrospinal fluid or mental retardation. Some individuals will have mild symptoms while others may be severely restricted in their daily life. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with early educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
National Organization of Disorders of the Corpus Callosum
http://www.nodcc.org/
Amniotic Band Syndrome:
Amniotic Band Syndrome refers to abnormalities caused by fibrous strands that can entangle or confine developing parts of the fetus. These strands are believed to arise from membranes that form outside the placenta. Symptoms associated with Amniotic Band Syndrome include limb or skull abnormalities, cleft lip/palate, scoliosis, and other, more complex abnormalities. The treatment is supportive with physical therapy, occupational therapy, orthopedic instruments, and when necessary, surgery. Most individuals will have a normal lifespan.
Amniotic Band Syndrome
http://www.amnioticbandsyndrome.com/
Acardiac Twinning (TRAP):
Anencephaly, Encephalocele, Hydrocephaly, Spina Bifida, and Related Conditions:
Anencephaly is a type of neural tube defect (NTD). Babies with anencephaly have major portions of the brain, the skull, and the scalp missing. They usually have normal bodies and functioning organs. The child may be born stillborn or the presence of a brain stem may keep the organs operating for a period of time, and the child may live anywhere from days to weeks, however the condition is ultimately terminal.
Encephalocele is a birth defect that results in a hole in the skull through which brain tissue protrudes. Other abnormalities often occur with encephaloceles. These may include hydrocephalus (excessive fluid in the brain), mirocephaly (abnormally small head), paralysis of the arms and legs, seizures, developmental delays, mental and growth retardation, and/or vision problems. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with early educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
Hydrocephalus is an abnormal build up of cerebrospinal fluid (CSF) in the brain that causes ventricles to enlarge and the pressure inside the head to increase. Hydrocephalus occurs when there is an imbalance in the amount of CSF being produced and absorbed. Hydrocephalus is treated by surgically placing a shunt in the brain, which drains into the abdomen, where the excess fluid is then reasorbed. Most individuals with this condition will have a normal lifespan and lead normal lives.
Anencephaly Blessings from Above
A pro-life anencephaly support group. A christian forum to encourage and support families whose baby has been newly diagnosed; who are currently carrying a baby to term or have carried a baby to term; who are considering, in the midst of, or having experienced a subsequent pregnancy; and any others who have been touched by anencephaly - parents, relatives, professionals, or friends who wish to share their stories and support. This forum respects the sanctity of life from conception to natural death.
http://clubs.yahoo.com/clubs/anencephalyblessingsfromabove
Anencephaly Support Foundation
Non-profit support organization with information, personal stories, and resources for families, parents, and medical professionals.
asf@asfhelp.com
Tel: 888-206-7526
http://www.asfhelp.com/
Anencephaly-Info
A comprehensive website of of parents stories, medical information, support, and resources
http://www.anencephalie-info.org/index.php
Faith Hope
A diagnosis of anencephaly has not stopped this young single mom from embracing every day, every moment, of her child's life, who lived beyond birth with this condition. A wonderful story of hope and encouragement for other mothers experiencing this devastating diagnosis.
http://babyfaithhope.blogspot.com/
Hydrocephalus Organization
Non-profit support and advocacy group information on resources and education for families and individuals.
870 Market Street, Suite 705
San Francisco, CA 94102
Tel: (415) 732-7040 or toll-free (888) 598-3789
info@hydroassoc.org
http://www.hydroassoc.org/
Spina Bifida Association
Voluntary health agency dedicated to support, education, advocacy, research and service
4590 MacArthur Boulevard, NW
Washington , DC 20007
Phone: 202-944-3285
Toll Free: 800-621-3141
Fax: 202-944-3295
http://www.spinabifidaassociation.org/
Anophtalmia/Microphtalmia (absent or small eyes):
Anophtalmia means that one or both eyes didn’t form during the early stages of pregnancy. Congenital anophtalmia may occur alone or with other malformations. Microphthalmia means that the eye/s started to form during pregnancy but stopped, leaving the baby with eyes that are smaller than normal. Treatment is supportive and corrective and can help these individuals reach their full developmental potential, with correctional and supportive treatment of physical abnormalities.
International Children's Anophthalmia Network
http://www.anophthalmia.org/
Micro and Anophthalmic Children's Society
http://www.macs.org.uk/
Micropthalmia Group
http://groups.yahoo.com/group/Microphthalmia
Anorectal Malformations (imperforate anus, rectal atresia):
Anorectal malformations are a group of birth defects than involve the external opening of the anus preventing the normal passage of stool. The anal opening may be smaller than normal size; in an abnormal location or not visible upon examination. Imperforate anus is usually present along with other birth defects—spinal problems, heart problems, tracheoesophageal fistula, esophageal atresia, renal anomalies, and limb anomalies are among the possibilities. Treatment for anorectal malformations includes immediate surgery to open a passage for feces and for the other accompnying conditions treatment consists of supportive treatment with physical therapy, occupational therapy, orthopedic instruments, and when necessary, surgery..
The Pull-Thru Network
http://www.pullthrough.org/
Cincinnati Children's Hospital: Imperforate Anus / Anorectal Malformations
http://www.cincinnatichildrens.org/health/info/abdomen/diagnose/anorectal-malformations-imperforate-anus.htm
Cleft Lip and Cleft Palate:
An oral cleft is a split or separation in the baby’s lip and/or palate. Cleft lip means that the two sides of the upper lip did not grow together properly. Cleft palate is a split or opening in the roof of the mouth. The opening in the lip or palate may be unilateral, only on one side, or bilateral, on both sides. Cleft lip and palate can occur together or individually. Cleft lip and palate is very treatable; however, the kind of treatment depends on the type and severity of the cleft. Possible treatment options include speech therapy, prosthetics (to cover or to close the gap made by the cleft palate), lengthening of the palate, and surgical procedures. A cleft lip or palate can be successfully treated with surgery, especially so if conducted soon after birth or in early childhood, and the scar becomes less visible with age. Speech problems are usually treated by a speech-language pathologist.
American Cleft Palate-Craniofacial Association/Cleft Palate Foundation
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820
(919) 933-9044
http://www.cleftline.org/
Cleft Lip and Palate Association
First Floor Green Man Tower
332B Goswell Road
London EC1V 7LQ
http://www.clapa.com/
Chromosomal Abnormalities:
Trisomy 13 (Patau Syndrome)
Patau syndrome, also known as trisomy 13 and trisomy D, is a chromosomal abnormality, a syndrome in which a patient has an additional chromosome 13, which means each cell in the body has three copies of chromosome 13 instead of the usual two copies. Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient. Treatment of Patau syndrome focuses on the particular physical problems with which each child is born. Many infants have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects. Surgery may be necessary to repair heart defects or cleft lip and cleft palate. Physical, occupational, and speech therapy will help individuals with Patau syndrome reach their full developmental potential.
Trisomy 18 (Edwards Syndrome)
Trisomy 18 (T18) (also known as Trisomy E or Edwards syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. Only 50% of liveborn infants live to 2 months, and only 5–10% survive their first year of life. Major causes of death include apnea and heart abnormalities. However, it is impossible to predict the exact prognosis of a child with Edwards syndrome during pregnancy or the neonatal period. The median lifespan is 5–15 days. One percent of children born with this syndrome live to age 10, typically in less severe cases of the mosaic Edwards syndrome.
Trisomy 21 (Down Syndrome)
Down syndrome is “a developmental abnormality characterized by trisomy of human chromosome 21" Most individuals with Down syndrome have mental retardation in the mild (IQ 50–70) to moderate (IQ 35–50) range, with individuals having Mosaic Down syndrome typically 10–30 points higher. Cognitive development in children with Down syndrome is quite variable. It is not currently possible at birth to predict the capabilities of any individual reliably, nor are the number or appearance of physical features predictive of future ability. Due to the nature of prenatal screens, each has a significant chance of a false positive, suggesting a fetus with Down syndrome when, in fact, the fetus does not have this genetic abnormality. Screen positives must be verified before a Down syndrome diagnosis is made. Treatment for individuals with Down Syndrome is supportive and corrective and can help these individuals reach their full developmental potential, with early developmental/educational intervention and special education services in the school, in-home education and support services for the family, behavioral therapy, medication, physical therapy, and occupational therapy as needed, and correctional and supportive treatment of physical abnormalities.
99 Balloons
A video journal created by parents documenting the life of their son Elliot, who was born with Trisomy 18 and lived 99 days.
http://www.youtube.com/watch?v=th6Njr-qkq0
http://www.ninetynineballoons.com/
A Trisomy 18 Journey
Support website with information on Trisomy 18/Trisomy 13, personal stories, and resources for families, parents, and medical professionals.
http://www.geocities.com/wilsfordmindy/
Band of Angels
Offers outreach, education, and support to parents and families of children with Down Syndrome as well as awareness and education for the medical professionals and the general public.
http://www.bandofangels.com/
CDAC
Offers scientific research, information, education, and suuport to parents and families of children with Down Syndrome as well as awareness and education for the medical professionals and the general public. Written by parents of a child with Down Syndrome.
http://www.cdadc.com/ds/
Hidden Treasures: The Trisomy 21 Journey
Parents from all around the world, who would like to share their stories.
http://hiddentreasuresthet21journey.blogspot.com/
International Mosaic Down Syndrome Association
The International Mosaic Down Syndrome Association is designed to assist any family or individual whose life has been affected by mosaic Down syndrome
http://www.imdsa.org/
Living with Trisomy
Support for Trisomy Families
http://www.livingwithtrisomy.org/
Mosaic Down Syndrome
Karlee has mosaic Down Syndrome. Her site also contains a whole page of family stories of other mosaic Down Syndrome children from around the world complete with e-mail links.
http://www.mosaicdownsyndrome.com/index.htm
National Down Syndrome Society
Offers advocacy, outreach, education, and support and resources for families, parents, and medical professionals. Helpline: 1-800-221-4602
http://www.ndss.org/
Pathfinder Village
A place where persons with Down Syndrome can get the support and acceptance they need to live productive lives.
http://www.pathfindervillage.org/
Recommended Down Syndrome Sites on the Internet
Compiled by Len Leshin, M.D.
http://www.ds-health.com/ds_sites.htm
SOFT
Support Organization for Families of Trisomy, a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder and education to families and professionals interested in the care of these children.
http://www.soft.org/
Three Weddings
A journal created by a mother, documenting the joys and challenges of raising 3 daughters, including daughter "Peanut" who was born with Trisomy 21 (Down Syndrome). Also, under her Blogroll, you can find links to blogs of other parents with infants/children with Down Syndrome.
http://www.my3weddings.com/
Unique - Rare Chromosome Disorder Support Group (UK)
http://www.rarechromo.org/
Video: DOWN SYNDROME!? not MY baby!!
Information and support by a parent for other parents of a child newly diagnosed with Down Syndrome
http://www.youtube.com/watch?v=JmjLW0nLmzA
Video: Dreams
Dreams features children and adults who have Down syndrome talking about their dreams and what they're proud of in their lives. This fun and inspirational video made by Scott and Julia Elliott celebrates the work of the National Down Syndrome Society and the larger Down syndrome community.
http://www.youtube.com/watch?v=-_-P4t2jR1g
Video: Grace: A Story of a Family and Down Syndrome
http://www.youtube.com/watch?v=VNvayF6ASOo
Video: "My Wish"
A video made by a family about their son with Down Syndrome, Cole
http://www.youtube.com/watch?v=lMdeYGEKEp0
Chromosomal Abnormalities (Others):
Prader-Willi syndrome (deletion on chromosome 15)
Cri-du-chat (cat cry) syndrome (deletion on chromosome 5)
Wolf-Hirschhorn syndrome (deletion on chromosome 4)
DiGeorge syndrome also known as 22q11 deletion syndrome ( deletion on chromosome 22)
5P-Society
(Cat Cry Syndrome)
P.O. Box 268
Lakewood CA 90714
(888) 970-0777
http://www.fivepminus.org/
Chromosome Deletion Outreach
P.O. Box 724
Boca Raton FL 33429
(561) 395-4252
http://www.chromodisorder.org/CDO/
Genetic and Rare Conditions Site
Medical Genetics, University of Kansas Medical Center
Lay advocacy and support groups, information on a wide variety of genetic conditions/birth defects for professionals, educators, and individuals.
http://www.kumc.edu/gec/support
The National Organization for Rare Disorders (NORD)
55 Kenosia Ave.
P.O. Box 1968
Danbury CT 06813
Tel: 1-800-999-6673
http://www.rarediseases.org/
Prader-Willi Syndrome Association
5700 Midnight Pass Rd., Suite 6
Sarasota FL 34242
(800) 926-4797
http://www.pwsausa.org/
Dandy-Walker syndrome (DWS)
Treatment for individuals with Dandy-Walker syndrome generally consists of treating the associated problems, if needed. A special tube (shunt) to reduce intracranial pressure may be placed inside the skull to control swelling. Treatment may also consist of various therapies such as occupational therapy, physical therapy, speech therapy or specialized education. Services of a vision teacher may be helpful if the eyes are affected.
Abbygail Marie
A mother and child's journey with Dandy-Walker syndrome
http://www.abbygailmarie.blogspot.com/
Ehlers-Danlos Syndrome (EDS) (also known as "Cutis hyperelastica"):
EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). There is no known cure for Ehlers Danlos Syndrome. The outlook for individuals with EDS depends on the type of EDS with which they have been diagnosed. Symptoms vary in severity, even within one sub-type, and the frequency of complications changes on an individual basis. Some individuals have mild symptoms while others are severely restricted in their daily life. The treatment is supportive with physical therapy, occupational therapy, nutritional, orthopedic instruments, and when necessary, surgery. Most individuals will have a normal lifespan.
Fetal Lower Urinary Tract Obstruction (LUTO):
Fragile X Syndrome (Martin-Bell syndrome):
Characteristics of the syndrome include intellectual disability, an elongated face, large or protruding ears, flat feet, larger testicles in men (macroorchidism), low muscle tone. Speech may include cluttered speech or nervous speech. Behavioral characteristics may include stereotypic movements (e.g., hand-flapping) and atypical social development, particularly shyness, limited eye contact, memory problems, and difficulty with face encoding, and some individuals with the fragile X syndrome also meet the diagnostic criteria for autism. Currently, the syndrome can be treated through behavioral therapy, special education, medication, and when necessary, correctional and supportive treatment of physical abnormalities
Heart Malformations and Defects:
A congenital heart defect is any abnormality of the heart’s structure or function. The following are a fee of the most common types:
Hypoplasia: Hypoplasia can affect the heart, which typically results in the failure of either the right ventricle or the left ventricle to develop adequately, leaving only one side of the heart capable of pumping blood to the body and lungs.
Septal Wall Defects: The septum is a wall of tissue which separates the left heart from the right heart. It is comparatively common for defects to exist in the interatrial septum or the interventricular septum, allowing blood to flow from the left side of the heart to the right, reducing the heart's efficiency.
Cyanotic Defects: Cyanotic heart defects are called such because they result in cyanosis, a bluish-grey discoloration of the skin due to a lack of oxygen in the body. Such defects include persistent truncus arteriosus, total anomalous pulmonary venous connection, tetralogy of Fallot, transposition of the great vessels, and tricuspid atresia.
Sometimes congenital heart defects improve with no treatment necessary. At other times the defect is so small, it does not require any treatment. Most of the time congenital heart defects are serious and are treatable with surgical repairs in infancy or childhood and/or medications. Interventional cardiology now offers patients minimally invasive alternatives to surgery.
Congenital Heart Information Network
information, support services, financial assistance and resources
http://tchin.org/
PediHeart:
Information, support, and resources for parents and medical professionals
http://www.pediheart.org/index.html
Little Hearts
Support for parents of children with heart defects
http://www.littlehearts.net/
Limb Abnormalities:
The Clubfoot Club
http://www.clubfootclub.org/
E-Hand.com (Electric Handbook of Hand Surgery): Syndactyly
Information on the condition as well as treatment and therapy options.
http://www.eatonhand.com/hw/hw019.htm
E-Hand.com (Electric Handbook of Hand Surgery): Polydactyly
Information on the condition as well as treatment and therapy options.
http://www.eatonhand.com/hw/hw024.htm
Helping Hands Foundation
A not-for-profit support group made up of parents who have children with upper limb differences.
http://www.helpinghandsgroup.org/
Reach
This UK group gives support and advice to families with children with a hand or arm deficiency.
http://www.reach.org.uk/
Super Hands Network
Hope and encouragement for kids with upper limb differences
http://www.superhands.us/
Polycystic Kidney Disease/
PKD Foundation
The PKD Foundation is the only organization, worldwide, dedicated to promoting research to find a cure for polycystic kidney disease (PKD) and improving the care and treatment of those it affects.
http://www.pkdcure.org/
Potter's Syndrome/Renal Agenesis
Potter's Syndrome Website
Whether your a family whose baby has just been diagnosed with Potter's Syndrome (Renal Agenesis, Potter's Sequence) or a family member or friend, or even someone who already has lost a baby to Potter's Syndrome and is looking for answers, this website was made for you.
http://www.potterssyndrome.org/
Selective Intrauterine Growth Restriction (SIUGR)
Thanatophoric Dysplasia
Thanatophoric dysplasia is a severe skeletal disorder characterized by extremely short limbs and folds of extra skin on the arms and legs. Children with this condition are usually stillborn or die shortly after birth from respiratory failure. Those who make it to birth will have difficulty breathing on their own and will require respiratory support such as high flow oxygen through a canula or ventilator support via tracheostomy.
Turner Syndrome
Turner syndrome or Ullrich-Turner syndrome (also known as "Gonadal dysgenesis") encompasses several conditions, of which the absence of the X sex chromosome is most common. It is a chromosomal abnormality in which all or part of one of the X sex chromosomes is absent.
Turner Syndrome Society of the US
The Turner Syndrome Society of the United States creates awareness, promotes research, and provides support for all persons touched by Turner Syndrome.
http://www.turnersyndrome.org/
Twin to Twin Transfusion Syndrome
Twin to Twin Transfusion Syndrome Foundation
information, the various treatments available, complications of multiple pregnancy, valuable support
http://www.tttsfoundation.org/
Ventriculomegaly
Ventriculomegaly is a brain condition that occurs when the lateral ventricles become dilated. The most common definition uses a width of the atrium of the lateral ventricle of greater than 10 mm.
UCSF Fetal Treatment Center: Ventriculomegaly
http://fetus.ucsfmedicalcenter.org/ventriculomegaly/
Maternal Health Conditions:
Diabetes and Pregnancy (from the American Diabetes Association
"Health care providers no longer discourage women with diabetes from becoming pregnant. We now know that the key to a healthy pregnancy for a woman with diabetes is keeping blood glucose (sugar) in the target range -- both before she is pregnant and during her pregnancy. To do this, you need a diabetes treatment plan that keeps meals, exercise, and insulin in balance. This plan will change as you change with pregnancy. You will also need to check your blood glucose often and keep a record of your results. With your blood glucose in the target range and good medical care, your chances of a trouble-free pregnancy and a healthy baby are almost as good as they are for a woman without diabetes."
http://www.diabetes.org/gestational-diabetes/pregancy.jsp
Hyperemesis Gravidarum
An entry I've created for awareness about HG with links to information sites, organizations and support boards.
http://mylifeinreflection.blogspot.com/2005/07/hyperemesis-gravidarum-its-beyond.html
Preeclampsia Foundation
http://www.preeclampsia.org/
Pregnant With Cancer
Information, resources, support, and hope
http://www.pregnantwithcancer.org/
Study Finds Abortion Not Needed When Pregnant Women Face Cancer Treatment
Dr. Beth Beadle, who works at the prestigious medical center and is the lead author of the study, told AP that both mother and baby can be cared for during treatment.
Ruth O'Regan, an associate professor at Emory University's Winship Cancer Institute in Atlanta, also told AP that cancer doctors can treat both mother and child without the need for an abortion.
http://www.ajc.com/i/content/health/stories/2009/02/09/breast_cancer_pregnancy.html
Continuing a Pregnancy After an Adverse Prenatal Diagnosis:
A Child of Promise
A ministry of the First Evangelical Free Church, A Child of Promise is a support group aimed at encouraging families to continue their pregnancy following an adverse pregnancy diagnosis. They currently provide individual counseling, and would like to eventually provide a monthly or bi-monthly support group meetings as they have enough families. A Child of Promis is a Christian organization, but is open to those of all faiths and to both mothers and fathers.
1375 Carman Rd.
Manchester, MO 6301
Tel: 636-227-0125
http://www.achildofpromise.org/
Abiding Hearts
A support system for parents continuing pregnancy after prenatal diagnosis of fatal (or non-fatal) birth defects; unplanned pregnancies included. Also a newsletter for parents who choose to carry a baby with a genetic defect to term. A $5 donation is requested to help defray mailing costs.
P.O. Box 904
Libby, MT 59923
Tel: 406-293-4416
Fax: 406-587-7197
Alexandra's House
A Charitable Perinatal Hospice and Infant Refuge, founded and located in Kansas City, Missouri, serving families across the United States of America. Their mission is to give hope, comfort, and meaning to suffering families and their very special babies. These are babies that are expected to die at or shortly after birth, but their parents make the heroic decision to carry their babies to term, in spite of its desperate outcome.
http://www.alexandrashouse.com/
American Association of Pro Life Obstetricians and Gynecologists
Provides referrals to medical doctors who are willing to provide care to women carrying a high risk pregnancy or adverse prenatal diagnosis to term.
http://www.aaplog.org/
Be Not Afraid
Be Not Afraid is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within BeNotAfraid.net are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The BeNotAfraid.net families faced the same decision and chose not to terminate. By sharing their experiences, they hope to offer encouragement to those who may be afraid to continue on.
http://www.benotafraid.net/
Carrying to Term Pages
After a devastating prenatal diagnosis, it's too often assumed that a mother will automatically terminate the pregnancy. This website was designed for those who are determined to carry their unborn child to term despite the child's fatal condition. While many tips come from personal experience, this site actively solicits tips from other mothers and fathers who have been there.
http://www.geocities.com/tabris02/index.html
High Risk Moms
A support group for and quarterly newsletter for those experiencing problem pregnancies. They provide perinatal telephone contact with moms who have experienced similar situations.
P.O. Box 389165
Chicago, IL 60638-9165
Tel: 708-515-5453
Miracle Angels Support Group
An email support group for parents who choose to continue their pregnancy after recieving a devastating prenatal diagnosis, whether or not the prognosis is fatal.
http://health.groups.yahoo.com/group/MiracleAngels/
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis
A well-researched yet easily understandable, positive guide when you need to make sense out of what seems to be senseless.
http://mychildmygift.com/
National Challenged Homeschoolers Associated Network
Christian Families Homeschooling Special Needs Children
http://www.nathhan.com/
Poor Prenatal Diagnosis Advice And Support
Information on treatment options, where to go for Information/Support/Resources, referrals for Fetal Treament facilities- prenatal corrective surgery, and stories from parents of a child with a condition.
http://www.geocities.com/pregnancyhelpnow/termination_for_medical_reasons.html
Prenatal Hospice: A Gift of Time
Compassionate support and resources for parents who have chosen to carry to term.
http://www.perinatalhospice.org/
Prenatal Partners for Life: Support, Information, and Encouragement
Prenatal Partners for Life is a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. We offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis.
http://www.prenatalpartnersforlife.org/pages/1/index.htm
Sidelines National Support Network
P.O. Box 1808 s
Laguna Beach, CA 92652
Tel: 1-888-447-4754.
A national network of volunteers offering support, education, advocacy and resources to families dealing with high-risk pregnancies. They publish a magazine, LeftSide Lines. To request support or information, or to order the magazine, call the above toll-free number.
http://www.sidelines.org/
String of Pearls
String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The path between grief and hope is a difficult place to walk; our desire is to provide guidance, compassion and practical suggestions as plans to honor the life of pre-born babies are crafted. Each life has a story worthy of telling and we are here for support as stories are lovingly written.
http://stringofpearlsonline.org/
Waiting with Love
For parents who choose to continue a pregnancy knowing their unborn baby will die before or shortly after birth and for families who learn their newborn will die
http://www.erichad.com/wwl/
Waiting With Love Multiple Pregnancy - Knowing Ahead
A checklist for families who are expecting multiples and know that one or more of the babies will not survive. Includes things you can do before birth and to prepare for birth and afterward.
http://www.erichad.com/wwl/twinsck.htm
Welcoming Babies with Down Syndrome
Information and support for parents who choose to carry their baby to term after a Down Syndrome diagnosis.
http://www.babycenter.com/0_welcoming-babies-with-down-syndrome_1817.bc
Welcoming Babies with Spina Bifida/Hydrocephalus
Information and support for parents who choose to carry their baby to term after a Spina Bifida/Hydrocephalus diagnosis.
http://www.waisman.wisc.edu/~rowley/sb-kids/wbwsb.html
Memorials and Healing for Loss:
A Place to Remember
This site offers information and support for those who have been faced with a crisis during pregnancy or the death of a baby. There is also an on-line bookstore with many books that might be helpful to families.
http://www.aplacetoremember.com/
Mommies Enduring Neonatal Death
M.E.N.D. (Mommies Enduring Neonatal Death) is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death.
http://www.mend.org/
Mothers in Sympathy and Support
This website provides support to families after the death of their baby or young child in the form of confrences, an online memorial, and healing resources.
http://www.misschildren.org/
"Now I Lay Me Down to Sleep"
When a baby or infant has died, Now I Lay Me Down to Sleep, through its nationwide network of professional photographers, will arrange a tasteful private sitting at the hospital with no charge for any services or pictures.
http://www.nowilaymedowntosleep.org/
Remembered Forever
This site was created to allow grieving users to build personalized memorials dedicated to their loved ones. The site was created after a sudden loss in the family, and Ian McIntosh and his whole family found it an excellent way of not only easing the grief process, but celebrating the life of a family member. Memorialization is important to families, and via the Remembered Forever site, it is unique in that it allows all members of the family to place their thoughts, memories, and condolences in one place.
http://www.remembered-forever.org/
SHARE Pregnancy and Infant Loss Support
SHARE's mission is to serve those who are touched by the tragic death of a baby through miscarriage, stillbirth, or newborn death.
http://www.nationalshareoffice.com/
For a Full Listing of Websites and Resources for Genetic Disorders try Genetic and Rare Conditions Site
This List of Websites for Poor Prenatal DX
Resources found through:
Google Search - poor prenatal diagnosis
Prenatal Diagnosis/Prognosis Support
University of Wisconsin-Madison Family Village
Tuesday, December 20, 2005
Today's Pro-Life Blogroll
Jivin Jehoshaphat cues us in to the newest abortion-promoting t-shirt. The Richmond Reproductive Freedom Project has created a new t-shirt for post-abortive women who are looking to fund another's abortion. This one reads, "ask me about my abortion!"
Naaman the Ex-Leper bids us fairwell. From a previous post: "In hindsight, I am becoming a little burned-out with respect to online debate. Please don't confuse burn-out with defeatism. I still believe that the handwriting is on the wall for the death of 'choice'." And from this current post: "... And now I'm ready to close the blog. I have responsibilities to my family, my church, my Via de Cristo brothers & sisters, and my employer." Fairwell, Namaan. Although I haven't always seen eye to eye with you, you were often the calm voice of reason between po-life and pro-choice. You will be missed. I wish you all the best for yourself, Mrs. Naaman, and little Naaman.
Christina at RealChoice explains the under-reporting of legalized abortions and inflation of maternal mortality numbers. "...any death of a pregnant woman, or of a woman who was known to have been recently pregnant, gets coded as "maternal mortality," even if her death had nothing to do with the pregnancy (i.e. automobile accident), or if her death was due to an induced abortion."
Dawn Eden of The Dawn Patrol temporarily comes out of hibernation to give us excellent pieces on Planned Parenthood caught in a proud confession of covering up rape and enabling an 11-year-old girl's rapist to continue his crimes. Also see crime expert Steve Huff's take on the matter, Part I and Part II
Annie Banno of After Abortion has put up a great list of links to news articles giving background on accusations that have been made against Planned Parenthood in various blogs
The Raving Athiest writes a piece entitled, "Don't Ask, Don't Care", which is about the non-cholant attitudes of some members of the Haven Coalition, an organization that provides overnight housing for women who flock to New York for elective, late second-trimester abortions.
Correction:
I had unintentionally mistyped Steve Huff's name and this has now been corrected. My apologies to Steve.
Naaman the Ex-Leper bids us fairwell. From a previous post: "In hindsight, I am becoming a little burned-out with respect to online debate. Please don't confuse burn-out with defeatism. I still believe that the handwriting is on the wall for the death of 'choice'." And from this current post: "... And now I'm ready to close the blog. I have responsibilities to my family, my church, my Via de Cristo brothers & sisters, and my employer." Fairwell, Namaan. Although I haven't always seen eye to eye with you, you were often the calm voice of reason between po-life and pro-choice. You will be missed. I wish you all the best for yourself, Mrs. Naaman, and little Naaman.
Christina at RealChoice explains the under-reporting of legalized abortions and inflation of maternal mortality numbers. "...any death of a pregnant woman, or of a woman who was known to have been recently pregnant, gets coded as "maternal mortality," even if her death had nothing to do with the pregnancy (i.e. automobile accident), or if her death was due to an induced abortion."
Dawn Eden of The Dawn Patrol temporarily comes out of hibernation to give us excellent pieces on Planned Parenthood caught in a proud confession of covering up rape and enabling an 11-year-old girl's rapist to continue his crimes. Also see crime expert Steve Huff's take on the matter, Part I and Part II
Annie Banno of After Abortion has put up a great list of links to news articles giving background on accusations that have been made against Planned Parenthood in various blogs
The Raving Athiest writes a piece entitled, "Don't Ask, Don't Care", which is about the non-cholant attitudes of some members of the Haven Coalition, an organization that provides overnight housing for women who flock to New York for elective, late second-trimester abortions.
Correction:
I had unintentionally mistyped Steve Huff's name and this has now been corrected. My apologies to Steve.
Monday, November 28, 2005
The Church's Stance on Pregnancy Outside of Wedlock
Last week, The Pro-Woman Pro-Lifer wrote about the concerns of a client she was pregnancy counseling. Was it her goals, dreams, and future? Her partner? Finances? Nope. She did have some concerns about her future, but she was able to work around those things. Her primary concern was her church. She's Catholic and lives in a small town. She expressed that she was concerned what others in her church would think of her and if they'd ridicule her for becoming pregnant outside of marriage. Most of the more conservative church's, including the Catholic Church, often teach and discourage sex outside of marriage, but that's not the issue. It's how they respond to women who've become pregnant....
A woman pregnant outside of wedlock may be shunned by those around her. I can understand why they wouldn't want to come off as condoning sex outside of marriage, but at the same time, they are essentially ostracizing and condemning woman who become pregnant out of wedlock. In the post, the PWPL pointed out to one of her pregnant clients, "how hypocritical it is for the church (Catholic or Protestant) to teach that abortion is murder and then shun women who decide not to have one." Eventhough the church teaches abortion is wrong, a woman may feel having an abortion is better than the shame and stigma of having the baby. It's no wonder that according to the Alan Guttmacher Institue, a large percentage of women who've had an abortion are Christian. According to the Pro-Woman Pro-Lifer, "The main focus should be to show them how helping pregnant women remain pregnant makes you feel good and does the work of Christ. That way, should she become pregnant, she'll know you won't ostracize her or judge her (or fire her). Preach the Gospel, and when necessary, use words. Teach them that children are a blessing that can be brought out of a bad decision, but abortion is a bad decision brought out of another bad decision."
Related Links of Interest:
U.S. and International Crisis Hotlines
If You Have An Adverse Pregnancy or Prenatal Diagnosis
If You're Facing an Unplanned or Unwanted Pregnancy
Various Religious Groups Beliefs on Abortion
Related Stories:
An unmarried Catholic school teacher named Michelle McCusker was fired after she told her employers that she was pregnant.
http://www.latimes.com/news/nationworld/nation/la-na-teacher26nov26,0,1503042.story?coll=la-home-nation
A woman pregnant outside of wedlock may be shunned by those around her. I can understand why they wouldn't want to come off as condoning sex outside of marriage, but at the same time, they are essentially ostracizing and condemning woman who become pregnant out of wedlock. In the post, the PWPL pointed out to one of her pregnant clients, "how hypocritical it is for the church (Catholic or Protestant) to teach that abortion is murder and then shun women who decide not to have one." Eventhough the church teaches abortion is wrong, a woman may feel having an abortion is better than the shame and stigma of having the baby. It's no wonder that according to the Alan Guttmacher Institue, a large percentage of women who've had an abortion are Christian. According to the Pro-Woman Pro-Lifer, "The main focus should be to show them how helping pregnant women remain pregnant makes you feel good and does the work of Christ. That way, should she become pregnant, she'll know you won't ostracize her or judge her (or fire her). Preach the Gospel, and when necessary, use words. Teach them that children are a blessing that can be brought out of a bad decision, but abortion is a bad decision brought out of another bad decision."
Related Links of Interest:
U.S. and International Crisis Hotlines
If You Have An Adverse Pregnancy or Prenatal Diagnosis
If You're Facing an Unplanned or Unwanted Pregnancy
Various Religious Groups Beliefs on Abortion
Related Stories:
An unmarried Catholic school teacher named Michelle McCusker was fired after she told her employers that she was pregnant.
http://www.latimes.com/news/nationworld/nation/la-na-teacher26nov26,0,1503042.story?coll=la-home-nation
Thursday, November 24, 2005
The Search for A Perfect Baby in an Imperfect World
Perfect Baby Syndrome
by Gina R. Dalfonzo
Bill and Emma Keller had a terrible decision to make. The tests showed something was wrong with their unborn child. He wasn’t growing properly, and it appeared his organs weren’t developing well.
Bill and Emma were torn over what to do. But Emma’s obstetrician knew. “We know you can get pregnant easily,” she told Emma. “Why risk an unhappy outcome?” She suggested an abortion. Other doctors they consulted also expected them to abort.
Eliminating problems
The remarkable unanimity of the Kellers’ physicians demonstrates a subtle but important shift in the way our society thinks about those with disabilities. As technology improves, more and more women will be able to find out whether their unborn children have abnormalities.
Our culture has bought into the bizarre idea that the best way to eliminate certain illnesses is simply to eliminate people who are ill before they have a chance to be born. It’s like a passage out of Madeleine L’Engle’s famous novel A Wrinkle in Time, where three children discover a planet that has “conquered all illness, all deformity,” because they have decided that “it is so much kinder simply to annihilate anyone who is ill.”
Picking and choosing
But we’ve gone even further in our quest for perfection. New techniques enable couples to choose the sex of their children — and if the procedure accidentally produces the wrong gender, the parents can eliminate the results and start again. Genetic engineering is rapidly advancing so parents will be able to create stronger, smarter, better-looking babies, raising the possibility of a world where anyone who hasn’t been artificially enhanced is seen as inferior.
How have we reached the stage where such manipulation — and destruction — have become viable options for parents? Its roots go back to Roe v. Wade, which changed the way many of us view our children and those with disabilities. The legal right to end the life of one’s unborn child transformed the parent-child relationship in ways the Supreme Court justices probably never anticipated.
In many ways, we now treat the unborn child more as a piece of property than as a sacred human life — a piece of property that must meet the buyer’s standard or be thrown away.
In an April 2004 article for The Weekly Standard, Gordon College professor Agnes Howard puts it this way: “Already we act as though what gives moral standing to pregnancy is the choosing of it, preferably in advance, if necessary after the fact, but always the conscious determination to continue rather than end it. . . . To universalize genetic diagnosis is to entrench even more deeply than we already have the idea that a baby becomes a baby only when we choose to grant that status — if and when it passes genetic muster.”
Sadly, the story of Bill and Emma Keller perfectly illustrates this attitude. For a long time, they held out hope that their unborn child, whom they called “Charlie,” might be normal. But as time went on, it became less and less likely. They lost hope that their child’s life would be worth living, or that his life would be worth their time and energy, not to mention the risk to Emma’s health.
“Facing the prospect of a greater heartbreak, watching a child die or suffer inconsolably, or exhausting the emotional resources needed for two other children, we decided to end it,” Bill Keller wrote in The New York Times. “The last thing Emma was aware of before surrendering to the anesthetic was Charlie kicking madly.”
According to the article, the Kellers still mourn the loss of Charlie. But they have since had a baby girl, who is — fortunately for her — normal.
The search for the perfect baby may sound harmless enough on the surface. But Charlie Keller is only one of its countless victims.
By destroying children like him; by forgetting the words of the One who said, “Whatever you did to the one of the least of these . . . you did to Me” — we may defeat certain diseases, but the price is our own moral and spiritual health.
Gina R. Dalfonzo is a writer for Chuck Colson’s BreakPoint program.
This article appeared in Focus on the Family magazine.
Copyright © 2005 Focus on the Family.
All rights reserved. International copyright secured.
http://www.family.org/fofmag/pp/a0035105.cfm
H/T to Luke'smom6 over at Baby Center's Carrying Pregnancy to Term Despite Fatal Prenatal Diagnosis Board
by Gina R. Dalfonzo
Bill and Emma Keller had a terrible decision to make. The tests showed something was wrong with their unborn child. He wasn’t growing properly, and it appeared his organs weren’t developing well.
Bill and Emma were torn over what to do. But Emma’s obstetrician knew. “We know you can get pregnant easily,” she told Emma. “Why risk an unhappy outcome?” She suggested an abortion. Other doctors they consulted also expected them to abort.
Eliminating problems
The remarkable unanimity of the Kellers’ physicians demonstrates a subtle but important shift in the way our society thinks about those with disabilities. As technology improves, more and more women will be able to find out whether their unborn children have abnormalities.
Our culture has bought into the bizarre idea that the best way to eliminate certain illnesses is simply to eliminate people who are ill before they have a chance to be born. It’s like a passage out of Madeleine L’Engle’s famous novel A Wrinkle in Time, where three children discover a planet that has “conquered all illness, all deformity,” because they have decided that “it is so much kinder simply to annihilate anyone who is ill.”
Picking and choosing
But we’ve gone even further in our quest for perfection. New techniques enable couples to choose the sex of their children — and if the procedure accidentally produces the wrong gender, the parents can eliminate the results and start again. Genetic engineering is rapidly advancing so parents will be able to create stronger, smarter, better-looking babies, raising the possibility of a world where anyone who hasn’t been artificially enhanced is seen as inferior.
How have we reached the stage where such manipulation — and destruction — have become viable options for parents? Its roots go back to Roe v. Wade, which changed the way many of us view our children and those with disabilities. The legal right to end the life of one’s unborn child transformed the parent-child relationship in ways the Supreme Court justices probably never anticipated.
In many ways, we now treat the unborn child more as a piece of property than as a sacred human life — a piece of property that must meet the buyer’s standard or be thrown away.
In an April 2004 article for The Weekly Standard, Gordon College professor Agnes Howard puts it this way: “Already we act as though what gives moral standing to pregnancy is the choosing of it, preferably in advance, if necessary after the fact, but always the conscious determination to continue rather than end it. . . . To universalize genetic diagnosis is to entrench even more deeply than we already have the idea that a baby becomes a baby only when we choose to grant that status — if and when it passes genetic muster.”
Sadly, the story of Bill and Emma Keller perfectly illustrates this attitude. For a long time, they held out hope that their unborn child, whom they called “Charlie,” might be normal. But as time went on, it became less and less likely. They lost hope that their child’s life would be worth living, or that his life would be worth their time and energy, not to mention the risk to Emma’s health.
“Facing the prospect of a greater heartbreak, watching a child die or suffer inconsolably, or exhausting the emotional resources needed for two other children, we decided to end it,” Bill Keller wrote in The New York Times. “The last thing Emma was aware of before surrendering to the anesthetic was Charlie kicking madly.”
According to the article, the Kellers still mourn the loss of Charlie. But they have since had a baby girl, who is — fortunately for her — normal.
The search for the perfect baby may sound harmless enough on the surface. But Charlie Keller is only one of its countless victims.
By destroying children like him; by forgetting the words of the One who said, “Whatever you did to the one of the least of these . . . you did to Me” — we may defeat certain diseases, but the price is our own moral and spiritual health.
Gina R. Dalfonzo is a writer for Chuck Colson’s BreakPoint program.
This article appeared in Focus on the Family magazine.
Copyright © 2005 Focus on the Family.
All rights reserved. International copyright secured.
http://www.family.org/fofmag/pp/a0035105.cfm
H/T to Luke'smom6 over at Baby Center's Carrying Pregnancy to Term Despite Fatal Prenatal Diagnosis Board
Sunday, October 30, 2005
Abortion: A Solution to Pregnancy from Rape?
I've seen some interesting commentary going on in reply to a post over at Abortion Clinic Days which got me thinking about my own stance on rape and abortion. I understand and sympathise with the woman who has been raped and support theraputic abortion in the case of rape. However, I'm concerned that societal stigma and well-meaning families and doctors are pressuring women who've become pregnant as a result of rape to have abortions and it's not a decision freely chosen by women. Also, I'm concerned that women are being mislead into believing that having an abortion and erasing the pregnancy will help bring them healing or closure from their rape, which they may not so easily find.
Caution: This post is an expression of my own personal opinions and views. This post is of a contraversial and sensitive topic, and may be a trigger for those who have experienced rape and/or abortion. I only recommend continuing to read this post and responses if you feel that you're at a place where you've found healing/peace and you are ready for often strong and opposing political views. If this posts upsets you or makes you feel uncomfortable in any way, this may not be the right time for you to read this and you may want to come back at a later time. Thank you.
A woman who has been raped has been physically assaulted, personally violated, and left with her an enormous and long-lasting trauma. In the case of rape and abuse, where she has been violated against her will, understandably there is a sense of loss of control over one's life. There are several essential needs at this point 1) address her physical needs by providing adequate medical care in the post-rape physical exam to treat for possible STDs and to prevent pregnancy, while respecting her privacy and the sensitivity of the situation 2) to address her emotional needs by providing non-judgmental support, understanding, and encouragement to seek professional counseling. 3) to stand by women and encourage them to report the rape early so that she can receive immediate medical treatment and so the rapist can be prosecuted so he won't trouble her or someone else again. We should provide a huge amount of support to help the woman report the rape. Only about 40% of rapes sexual assaults were reported to law enforcement in 2003(1).
In 2003, there were 198,850 victims of rape, attempted rape or sexual assault sccording to the 2003 National Crime Victimization Survey. Unfortuantly, up to 4,065 pregnancies may have resulted from these attacks(1). Both sides of the debate typically accept the notion that women with a pregnancy resulting from a sexual assault would want an abortion and the abortion will some how help her heal or recover from the assault. "But in the only major study of pregnant rape victims ever done, Dr. Sandra Mahkorn found that 75 to 85 percent chose against abortion."(2)Having an abortion is a major life event which is almost always stressful and sometimes even traumatic. Will an abortion truly help her, or will it only cause further hurt? "In answering this question, it is helpful to begin by noting that many women report that their abortions felt like a degrading and brutal form of medical rape"(3). Abortion involves an often intimate and painful examination of a woman's sexual organs. Also, once she is on the operating table, she must temporarily give up control of her body. This experiential association between abortion and sexual assault is very strong for many women. It is especially strong for women who have a prior history of sexual assault, whether or not she is presently pregnant as the result of an assault(4).Second, research shows that after any abortion, it is common for women to experience guilt, depression, feelings of being "dirty," resentment of men, and lowered self-esteem. What is most significant is that these feelings are identical to what women typically feel after rape. Abortion, then, only adds to and accentuates the traumatic feelings associated with sexual assault. Rather than easing the psychological burdens of the sexual assault victim, abortion adds to them."(6) Also, a woman may find that the emotional and physical hurts may still be there even after an abortion and she will still need lots of love, support, counseling, and time to heal.
Feelings of guilt, shame, devaluement, humiliation, and dirtiness are common reactions following a sexual assault. These may be further perpetuated by stereoptypes and myths about rape. A victim or rape may be stigmatized by her peers, friends, and even family. They may subtlly or not so sutly push for an abortion. "Feelings of guilt and shame are common reactions following a sexual assault. Because of misconceptions about rape, some victims blame themselves, doubt their own judgment, or wonder if they were in some way responsible for the assault. Feelings of guilt and self-blame may be reinforced by the reactions of others, who, because of prevalent myths about rape, may blame the victim or criticize his or her behavior."(6) Those encouraging abortion often do so because they are uncomfortable dealing with rape victims, or perhaps out of prejudice against victims whom they see as being "guilty for letting it happen. 'Wiping out the pregnancy is a way of hiding the problem. It is a "quick and easy" way to avoid dealing with the woman's true emotional, social and financial needs'(5). Keep in mind rape is usually a pre-meditated act of violence, of control and domination.
Also, those surrounding the woman (friends, co-workers, family) may harbor a sense of animosity towards a child concieved in rape and/or the child may be looked down upon unfavorably because of the circumstances surrounding her conception. The woman may be strongly pressured by those close to her and around her to have an abortion. Some may see wiping out the pregnancy is a way of hiding the problem. Another concern is that of will carrying to pregnancy to term cause the woman more emotional damage and serve as a reminder of the rape? The child of a rape will not necessarily cause further emotional damage to the mother. It may be in fact beneficial to her healing. Should she continue with the pregnancy, she may sense that if she can get through the pregnancy, she will have conquered the rape. Also, she might feel that she wants to rise above the violence done to her by protecting her child, has the ability to show compassion to her child, and prove to herself that she is brave and loving where the rapist was cowardly and hateful, that she is peaceful where he was violent, that she respects life where he tried to ruin hers. And so from that she may heal and grow stronger and prove to all that she is an infinitely better person that he could ever be(5). Also, by carrying the pregnancy to term, she would reveal the abuse which has happened to her.
A child conceived in rape may be labeled "the rapist's spawn" and even blamed for the rape or ruining the woman's life. No, harm was already done when he violated her. No one is to blame but the rapist for forcing the pregnancy on her. The child had no control over how he/she was conceived and is a second victim of the rape. Describing a child concieved in rape as
Regardless of the pregnancy outcome, a victim of rape still needs lots of love, support, and counseling, and time to heal.
If you have ever been raped, it's not too late to get help:
Call the RAINN hotline at 1.800.656.HOPE It's free and confidential.
or see my listing of hotlines for a complete list and international numbers.
State Laws on Statutes of Limitations
Books Suggested by Survivors
Understanding the Impact of Rape
Drugs Used in Rape
Works Cited: 1. The Rape, Abuse, and Incest Network's Statistic's page.
http://www.rainn.org/statistics/index.html
RAINN's "two and a half minute" calculation is based on 2003 National Crime Victimization Survey from the Bureau of Justice Statistics, U.S. Department of Justice.
2. Mahkorn, "Pregnancy and Sexual Assault," The Psychological Aspects of Abortion, eds. Mall & Watts, (Washington, D.C., University Publications of America, 1979) 55-69
3. Francke, The Ambivalence of Abortion (New York: Random House, 1978) 84-95, 167.; Reardon, Aborted Women - Silent No More (Chicago: Loyola University Press, 1987), 51, 126.
4. 3. Zakus, "Adolescent Abortion Option," Social Work in Health Care, 12(4):87 (1987).
5. David C. Reardon, Ph.D. in Rape, Incest and Abortion: Searching Beyond the Myths.
http://afterabortion.org/rape.html
6. Rape Treatment Center, Santa Monica - UCLA Rape Treatment Center
Impact of Rape: Self-Blame and Shame
http://66.216.123.69/RTC/Impact+of+Rape/Self-Blame+and+Shame/
I would like to thank the following sites for providing valuable insight and information: http://www.pregnantpause.org/aborted/curerape.htm
http://www.rape-awareness.freewebspace.com/
http://www.geocities.com/HotSprings/2402/
Caution: This post is an expression of my own personal opinions and views. This post is of a contraversial and sensitive topic, and may be a trigger for those who have experienced rape and/or abortion. I only recommend continuing to read this post and responses if you feel that you're at a place where you've found healing/peace and you are ready for often strong and opposing political views. If this posts upsets you or makes you feel uncomfortable in any way, this may not be the right time for you to read this and you may want to come back at a later time. Thank you.
A woman who has been raped has been physically assaulted, personally violated, and left with her an enormous and long-lasting trauma. In the case of rape and abuse, where she has been violated against her will, understandably there is a sense of loss of control over one's life. There are several essential needs at this point 1) address her physical needs by providing adequate medical care in the post-rape physical exam to treat for possible STDs and to prevent pregnancy, while respecting her privacy and the sensitivity of the situation 2) to address her emotional needs by providing non-judgmental support, understanding, and encouragement to seek professional counseling. 3) to stand by women and encourage them to report the rape early so that she can receive immediate medical treatment and so the rapist can be prosecuted so he won't trouble her or someone else again. We should provide a huge amount of support to help the woman report the rape. Only about 40% of rapes sexual assaults were reported to law enforcement in 2003(1).
In 2003, there were 198,850 victims of rape, attempted rape or sexual assault sccording to the 2003 National Crime Victimization Survey. Unfortuantly, up to 4,065 pregnancies may have resulted from these attacks(1). Both sides of the debate typically accept the notion that women with a pregnancy resulting from a sexual assault would want an abortion and the abortion will some how help her heal or recover from the assault. "But in the only major study of pregnant rape victims ever done, Dr. Sandra Mahkorn found that 75 to 85 percent chose against abortion."(2)Having an abortion is a major life event which is almost always stressful and sometimes even traumatic. Will an abortion truly help her, or will it only cause further hurt? "In answering this question, it is helpful to begin by noting that many women report that their abortions felt like a degrading and brutal form of medical rape"(3). Abortion involves an often intimate and painful examination of a woman's sexual organs. Also, once she is on the operating table, she must temporarily give up control of her body. This experiential association between abortion and sexual assault is very strong for many women. It is especially strong for women who have a prior history of sexual assault, whether or not she is presently pregnant as the result of an assault(4).Second, research shows that after any abortion, it is common for women to experience guilt, depression, feelings of being "dirty," resentment of men, and lowered self-esteem. What is most significant is that these feelings are identical to what women typically feel after rape. Abortion, then, only adds to and accentuates the traumatic feelings associated with sexual assault. Rather than easing the psychological burdens of the sexual assault victim, abortion adds to them."(6) Also, a woman may find that the emotional and physical hurts may still be there even after an abortion and she will still need lots of love, support, counseling, and time to heal.
Feelings of guilt, shame, devaluement, humiliation, and dirtiness are common reactions following a sexual assault. These may be further perpetuated by stereoptypes and myths about rape. A victim or rape may be stigmatized by her peers, friends, and even family. They may subtlly or not so sutly push for an abortion. "Feelings of guilt and shame are common reactions following a sexual assault. Because of misconceptions about rape, some victims blame themselves, doubt their own judgment, or wonder if they were in some way responsible for the assault. Feelings of guilt and self-blame may be reinforced by the reactions of others, who, because of prevalent myths about rape, may blame the victim or criticize his or her behavior."(6) Those encouraging abortion often do so because they are uncomfortable dealing with rape victims, or perhaps out of prejudice against victims whom they see as being "guilty for letting it happen. 'Wiping out the pregnancy is a way of hiding the problem. It is a "quick and easy" way to avoid dealing with the woman's true emotional, social and financial needs'(5). Keep in mind rape is usually a pre-meditated act of violence, of control and domination.
Also, those surrounding the woman (friends, co-workers, family) may harbor a sense of animosity towards a child concieved in rape and/or the child may be looked down upon unfavorably because of the circumstances surrounding her conception. The woman may be strongly pressured by those close to her and around her to have an abortion. Some may see wiping out the pregnancy is a way of hiding the problem. Another concern is that of will carrying to pregnancy to term cause the woman more emotional damage and serve as a reminder of the rape? The child of a rape will not necessarily cause further emotional damage to the mother. It may be in fact beneficial to her healing. Should she continue with the pregnancy, she may sense that if she can get through the pregnancy, she will have conquered the rape. Also, she might feel that she wants to rise above the violence done to her by protecting her child, has the ability to show compassion to her child, and prove to herself that she is brave and loving where the rapist was cowardly and hateful, that she is peaceful where he was violent, that she respects life where he tried to ruin hers. And so from that she may heal and grow stronger and prove to all that she is an infinitely better person that he could ever be(5). Also, by carrying the pregnancy to term, she would reveal the abuse which has happened to her.
A child conceived in rape may be labeled "the rapist's spawn" and even blamed for the rape or ruining the woman's life. No, harm was already done when he violated her. No one is to blame but the rapist for forcing the pregnancy on her. The child had no control over how he/she was conceived and is a second victim of the rape. Describing a child concieved in rape as
the rapist's babyimplies that he has some sort of ownership of the child that he forced upon the mother, and so implies that she can never truly take guardianship of the child and despite nurturing the child in her womb; that the child will always somehow be his or a monster like him in some way beyond mere genetics. The preborn child is an individual person in existence at fertilization and is not an extension of the father's body and is not a part of the mother's body. The child is more than just a product of rape, this is also her baby and individual human being. Regardless of the circumstances surrounding a child's conception, each child has worth and is deserving of love. How the child began is not what matters as much as a child raised with love, nuturing care, and encouragement so she can make the most of her life.
Regardless of the pregnancy outcome, a victim of rape still needs lots of love, support, and counseling, and time to heal.
If you have ever been raped, it's not too late to get help:
Call the RAINN hotline at 1.800.656.HOPE It's free and confidential.
or see my listing of hotlines for a complete list and international numbers.
State Laws on Statutes of Limitations
Books Suggested by Survivors
Understanding the Impact of Rape
Drugs Used in Rape
Works Cited: 1. The Rape, Abuse, and Incest Network's Statistic's page.
http://www.rainn.org/statistics/index.html
RAINN's "two and a half minute" calculation is based on 2003 National Crime Victimization Survey from the Bureau of Justice Statistics, U.S. Department of Justice.
2. Mahkorn, "Pregnancy and Sexual Assault," The Psychological Aspects of Abortion, eds. Mall & Watts, (Washington, D.C., University Publications of America, 1979) 55-69
3. Francke, The Ambivalence of Abortion (New York: Random House, 1978) 84-95, 167.; Reardon, Aborted Women - Silent No More (Chicago: Loyola University Press, 1987), 51, 126.
4. 3. Zakus, "Adolescent Abortion Option," Social Work in Health Care, 12(4):87 (1987).
5. David C. Reardon, Ph.D. in Rape, Incest and Abortion: Searching Beyond the Myths.
http://afterabortion.org/rape.html
6. Rape Treatment Center, Santa Monica - UCLA Rape Treatment Center
Impact of Rape: Self-Blame and Shame
http://66.216.123.69/RTC/Impact+of+Rape/Self-Blame+and+Shame/
I would like to thank the following sites for providing valuable insight and information: http://www.pregnantpause.org/aborted/curerape.htm
http://www.rape-awareness.freewebspace.com/
http://www.geocities.com/HotSprings/2402/
Thursday, October 20, 2005
Study Compares Depression with Abortion and Carrying to Term
Long-term Study Compares Depression with Abortion and Carrying to Term
Quoting from this site:
I do not have a response to this at this time; however, The Pro-Women Pro-Lifer has written a well-thought-out response to this study.
http://theprowomanprolifer.blogspot.com/2005/11/abortion-and-depression.html
David C. Reardon, Ph.D and author of the previous study responds to the new study and findings:
His response is the 5th one down and is called, "Study fails to address our previous findings and subject to misinterpretation."
http://bmj.bmjjournals.com/cgi/eletters/bmj.38623.532384.55v1
Also, After Abortion has a listing of medical research about the psychological aftermath of abortion
http://afterabortion.blogspot.com/2004/08/medical-research-about-psychological.html
Quoting from this site:
Abortion doesn't raise depression risk: study showsThe complete study can be found at: http://bmj.bmjjournals.com/cgi/rapidpdf/bmj.38623.532384.55v1.pdf
Fri Oct 28, 2005 8:53 PM BST
NEW YORK (Reuters Health) - Among women with an unwanted pregnancy, those who carry the pregnancy to term are more likely to experience later depression than those who terminate the pregnancy with an abortion, new study findings suggest.
Well-designed studies have generally shown that abortion does not contribute to an increased risk of depression, Dr. Sarah Schmiege and Dr. Nancy Felipe Russo note in their report in BMJ Online First, published October 28.
However, one previous study examining these associations among women with an unwanted first pregnancy found that induced abortion was associated with a higher risk of depression than a pregnancy carried to term.
But Schmiege, from the University of Colorado in Boulder, and Russo, from Arizona State University in Tempe, believe this analysis was flawed.
For their study, they identified a large group of women ages 14 to 21 in 1979 who had an unwanted pregnancy between 1970 and 1992 and for whom personal and outcome data were available. The women were interviewed over several years to examine the relation between pregnancy outcome and later depression.
The authors found that terminating compared to delivering an unwanted first pregnancy was not directly related to risk of depression. Instead, women who delivered before 1980 had a much higher risk of depression than all other groups.
These findings "directly contradict the claim that terminating an unwanted first pregnancy puts women at higher risk of subsequent depression, particularly for younger women," Schmiege and Russo contend.
Their analysis also showed that women who had aborted a pregnancy had significantly higher mean education attainment and income and lower total family size. These factors could explain the higher risk of depression among women who don't abort an unwanted pregnancy.
"This suggests that if the goal is to reduce women's risk for depression, research should focus on how to prevent and ameliorate the effect of unwanted childbearing, particularly for younger women," the authors conclude.
I do not have a response to this at this time; however, The Pro-Women Pro-Lifer has written a well-thought-out response to this study.
http://theprowomanprolifer.blogspot.com/2005/11/abortion-and-depression.html
David C. Reardon, Ph.D and author of the previous study responds to the new study and findings:
His response is the 5th one down and is called, "Study fails to address our previous findings and subject to misinterpretation."
http://bmj.bmjjournals.com/cgi/eletters/bmj.38623.532384.55v1
Also, After Abortion has a listing of medical research about the psychological aftermath of abortion
http://afterabortion.blogspot.com/2004/08/medical-research-about-psychological.html
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