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:)
My Life in Reflection
Wednesday, December 28, 2005
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.
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