Poor Prenatal Diagnosis
This site is dedicated to those who have received a poor prenatal diagnosis.
It is maintained by volunteers and is solely for support.
All non-supportive posts will be removed
Listed are websites that offer information, support, facts, links and resources for many birth defects and poor prenatal diagnoses.
On this page:
Websites that offer Information or Support:
Alpha-Fetal Protein Test (AFP)
Amnioscentesis
CVS Information
Trans Nuchal Fold Scan Information
Amniotic Bands
Anencephaly
Arthrogryposis Multiplex Congenita
Balanced Translocation
Brain Malformations/Dandy Walker/Hydrocephalus
Choroid Plexus Cyst Information
Cri-du-Chat Syndrome
Congenital Cystic Adenomatoid Malformation
Congenital Diaphragmatic Hernia (CDH)
Cystic Fibrosis Information
Heart Defect Information
Hypoplastic Left Heart Syndrome
Klinefelter Syndrome
Meckel Syndrome Information (Meckel Gruber Syndrome)
Molar/partial mole pregnancy information
Norrie Disease
Oligohydramnios and Polyhydramnios
Polycystic Kidney Disease Information
Potter's Syndrome
Premature Rupture of Membranes
Selective Reduction
Spina Bifida Information
Tetraploidy (4 sets of chromosomes)
Triploidy Syndrome
Tricuspid Atresia
Trisomy 13 Information (Patau Syndrome)
Trisomy 15 Information (Angelman
Syndrome and Prader Willi Syndrome)
Trisomy 18 Information (Edward’s Syndrome)
Trisomy 21 Information (Down Syndrome)
Trisomy 22 (Cat Eye Syndrome (partial 22)
Turner Syndrome Information
Twin to Twin Transfusion Syndrome
VACTERL Syndrome
Ventriculomegaly
Other Sites and Links:
Afghans for Angels - baby blankets for infant loss
Clinics that offer information
for termination for medical reasons
Banking Milk
Folic Acid Information
Genetics Counseling sites
Information regarding HCG levels (pregnancy hormone)
Sites to offer support for loss
Websites of hospitals that specialize in fetal surgery
Medline "PubMed"
Main Medline database
Disclaimer:
This web site was designed to offer information and support for parents receiving a poor prenatal diagnosis. The author of this site is not a trained medical professional and this site is not intended as a replacement for medical care or advice, it is solely intended as an informational and support site. The posts contained in the message boards are the sole opinions of the individuals providing them, and the author/hosts of this site can not be held legally responsible for any responses contained here within. The posts contained herein are not a substitute for medical care or advice and are solely the opinions and advice given by said posters. Poorprenataldiagnosis.com presents these links and posts as is, without any guarantee express or implied, and are not liable for any loss or damage caused by a user’s dependence on information obtained from this website.
In Our Hearts Forever Memorial Personalized Oval Glass Ornament
Sympathy Flowers
Angel of Bereavement by Foundations
Condolence Vase Arrangement
About this Site:
Informational Brochure
All links have been tested, if you find one that is broken or incorrect, please click
here
and we will research and correct the problem.
These links were compiled by Marsha and added to and tested by Ayliea. Many thanks to them for the hard work of compiling and testing all links.
This site is dedicated to help those who have received a poor prenatal diagnosis. It is maintained solely by volunteers. If you would like more information about this site please email the administrator at:
postmaster@poorprenataldiagnosis.com
List of book resources:
Our Heartbreeaking Choices
Empty Cradle, Broken Heart: Surviving the Death of Your Baby
A Time to Decide a Time to Heal:
for Parents Making Difficult Decisions About Babies They Love
A Mother's Dilemma - a Spiritual Search for Meaning
Following Pregnancy Interruption After Prenatal Diagnosis
Precious Lives, Painful Choices: A Prenatal Decision Making Guide
How to Survive the Loss of a Child
Gifts: Mothers Reflect on How Children with
Down Syndrome Enrich Their Lives Guide
Loving and Letting Go For Bereaved Parents
Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life
Defiant Birth: Women Who Resist Medical Eugenics
WEBSITES THAT OFFER INFORMATION OR SUPPORT:
http://ibis-birthdefects.org/index.htm (International Birth Defects Information Systems)
http://perinatalhospice.org (Continuing a fatal or terminal pregnancy)
http://www.afterabortion.com (Support for Women who have had an abortion)
http://www.aheartbreakingchoice.com (Support for termination due to a serious or fatal Prenatal Diagnosis)
http://www.aplacetoremember.com(Material and resources for crisis pregnancy or death of a baby)
http://www.arc-uk.org/ (Antenatal Results and Choices)
http://www.birthdefects.org/ (Birth Defect Research for Children)
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus1168 (Considering Termination: Medical Reasons Board)
http://boards.babycenter.com/n/pfx/forum.aspx?nav=messages&webtag=bcus1311584 (Poor Prenatal Diagnosis Board)
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus1311592 (Poor Prenatal Diagnosis Pregnancies Board - for those who choose to continue a PPD Pregnancy)
http://boards.babycenter.com/n/pfx/forum.aspx?nav=messages&webtag=bcus5724 (Termination Alternatives Board)
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus4293 (Termination for Medical Reasons Board)
http://www.benotafraid.net (Support for continuing a poor or difficult Prenatal Diagnosis)
http://www.chromodisorder.org (Chromosome Deletion Outreach)
http://www.erichad.com/wwl/ (Waiting with Love)
http://www.hopeafterabortion.com (pro-life)
http://www.kumc.edu/gec/support/chromoso.html (Support Groups for Chromosomal Conditions)
http://www.kumc.edu/gec/support/groups.html (Genetic and Rare Conditions Site)
http://www.modimes.org (March of Dimes)
http://www.noparh.org/ (National Office of Post Abortion Reconciliation and Healing)
http://www.npic.org/pcd_survey/survey.html (State by State list of high risk obs/newborn services)
http://www.rarechromo.org (Rare Chromosome Disorder Support Group)
PRENATAL TESTING:
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Alpha-Fetal Protein Test (AFP)
http://pregnancy.about.com/library/weekly/aa120897.htm (Information)
http://www.parentsplace.com/expert/midwife/qas/0,10338,239700_100615,00.html (Information- Q&A)
Amnioscentesis
http://familydoctor.org/handouts/144.html (Information)
http://wonder.cdc.gov/wonder/prevguid/m0038393/m0038393.asp#head001000000000000 (Information)
CVS Information
http://familydoctor.org/handouts/144.html (Information - CVS vs. Amnio)
http://wonder.cdc.gov/wonder/prevguid/m0038393/m0038393.asp#head001000000000000 (Information)
http://www.hon.ch/Dossier/MotherChild/common_procedures/chronic_villi.html (Description and Information)
http://www.obgyn.upenn.edu/genetics/cvs.html (Information)
http://www.obgyn.upenn.edu/History/cvs.html (Diagram - Information)
Trans Nuchal Fold Scan Information
http://www.fetalmedicine.com/11-14scanbook/Chapter1/chap01-3.htm (Information)
http://www.gynaecology.cz/prenatal.html (Prenatal Diagnostics General Information)
http://www.babycenter.com/refcap/pregnancy/prenatalhealth/118.html" (Information)
PRENATAL DIAGNOSES:
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Amniotic Bands
http://www.bdid.com/abs.htm (Links to Information)
Anencephaly
http://groups.msn.com/MourningMommies (Supports all choices made upon diagnosis of Anencephaly)
http://health.groups.yahoo.com/group/anencephalyblessingsfromabove/(Pro-Life, full-term anencephaly support forum)
http://www.anencephalie-info.org/e/index.htm (Anencephaly Information)
http://www.asfhelp.com/ (Helps parents who wish to continue these pregnancies)
http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm (Anencephaly Information Page - Recommended)
Arthrogryposis
http://www.amcsupport.org (Information and Support)
Balanced Translocation – Inherited Chromosome Disorder
http://health.groups.yahoo.com/group/balanced-translocations/ (Yahoo Support Group)
Brain Malformations/Dandy Walker/Hydrocephalus
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http://www.egroups.com/community/dandywalker (Yahoo Dandy Walker message board)
http://www.egroups.com/group/cerebellum (Yahoo hypoplasia message board)
http://www.HydroAssoc.org (The Hydrocephalus Association, Information, resources)
http://www.ibis-birthdefects.org/start/ntdfact.htm#chiari (I.B.I.S. - Links, Resources)
http://www.patientcenters.com/hydrocephalus/news/whatishydro.html (Hydrocephalus Center - Recommended)
http://www.stanford.edu/group/hpe/about/ (The Carter Center for Brain Research - What is Holoprosencephaly, Information)
Choroid Plexus Cyst Information
http://www.choroidplexuscyst.org/ (ChoroidPlexusCyst.org message board)
http://www.wcox.com.au/choroid.htm (Information)
Cri-du-Chat Syndrome Also known as "Cat Cry" or 5P Syndrome
(loss of genetic material/misplacement of 5th chromosome)
http://www.cridchat.u-net.com/ (Information, Support Group)
http://www.fivepminus.org/about.htm (Information)
Congenital Cystic Adenomatoid Malformation (CCAM)
http://www.emedicine.com/radio/topic186.htm (Information)
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijanp/vol5n2/ccam.xml (Information)
Congenital Diaphragmatic Hernia (CDH)
http://www.arainbowofhope.com/ (CDH Information - Recommended)
http://www.breathofhopeinc.com/(CDH Information and Support)
http://www.cdhsupport.org/cdh/overview.php (What is CDH - Information)
http://www.cdhsupport.org (Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support)
http://www.emedicine.com/ped/topic2603.htm (CDH Information - Recommended)
Cystic Fibrosis (CF)
http://www.cff.org/AboutCF/ (Cystic Fibrosis Foundation - Recommended)
http://en.wikipedia.org/wiki/Cystic_fibrosis (Information - Description)
http://www.cfri.org/home.html (Information - Recommended)
http://cf.conncoll.edu/index1.html (Cystic Fibrosis Bulliten Board - Support Group)
http://www.geocities.com/hotsprings/spa/3247/cf.html (Cystic Fibrosis Information, Links and Support Groups)
Fragile X Syndrome
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http://www.fraxa.org/ (The Fragile X Research Foundation)
http://www.fraxa.org/catalog.htm (Links to Fragile X Sites)
http://www.fpg.unc.edu/~fxic/ (Fragile X Information Center)
Heart Defect Information
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus1202028 (BC Babies with heart problems board)
http://tchin.org/index.htm (Congenital Heart Information Network - Information, resources and support)
http://www.congenitalheartdefects.com/ (Information and Resources for the CHD Community)
http://www.heartbirthdefects.com/ (CHD Awareness - scroll down to CHD : An Overview)
http://www.littlehearts.net/ (Congenital heart defects support goup)
http://www.marchofdimes.com/professionals/681_1212.asp (March of Dimes, CHD Information - Recommended)
Hypoplastic Left Heart Syndrome
http://chorus.rad.mcw.edu/doc/00969.html (Information)
http://www.geocities.com/Heartland/8395/ (Hypoplastic Left Heart Syndrome - Joshua's Story)
http://www.lhm.org.uk/ (Little Hearts Matter - Support Group)
http://www.tmc.edu/thi/lefthear.html (Texas Heart Institute - Information - Recommended)
http://www.pediheart.org/parents/defects/HLHS.htm (Pediheart - Information - Recommended)
Klinefelter Syndrome
http://www.genetic.org (Information and Support - Recommended)
http://www.healthopedia.com/klinefelter-syndrome/ (Information)
http://www.nichd.nih.gov/publications/pubs/klinefelter.htm (Information)
http://www.nlm.nih.gov/medlineplus/klinefelterssyndrome.html (Information)
Meckel Syndrome Information (Meckel Gruber Syndrome)
http://www.obgyn.net/us/cotm/9809/cotm_9809.htm (Information - Case History)
Molar/partial mole pregnancy information
http://pregnancy.about.com/cs/pregnancyloss/a/aa072599.htm (Information)
Norrie Disease
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http://ghr.nlm.nih.gov/condition=norriedisease (What is Norrie Disease)
http://www.familyvillage.wisc.edu/lib_norrie.htm (Norrie Disease Association)
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Norrie%20Disease (Information)
Oligohydramnios (lack of amniotic fluid)
Polyhydramnios (too much amniotic fluid)
http://brighamrad.harvard.edu/Cases/bwh/hcache/31/full.html (Oligohydramnios -Information)
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus1202046 (amniotic fluid disorders)
http://pregnancytoday.com/reference/articles/oligohydramnios.htm (Oligohydramnios - Information)
Polycystic Kidney Disease Information
http://www.geocities.com/HotSprings/Spa/3265/ (Information, Links)
Potter's Syndrome (Renal Agenesis, Potter's Sequence)
http://www.potterssyndrome.org/ (Information and support)
Premature Rupture of Membranes
http://www.kanalen.org/prom/
Rare Disorders:
Pentalogy of Cantrell
http://www.thefetus.net/page.php?id=57 (Information)
http://www.webmd.com/hw/raising_a_family/nord939.asp (Information)
Selective Reduction:
http://haveababy.com/infert/selred.asp
http://www.bbc.co.uk/health/ask_doctor/pregnancy_reduction.shtml
http://health.ivillage.com/infertility/infertmedical/0,,5llw,00.html (Information)
http://www.miami-ivf.com/education/fertilitybooklet/selective_reduction.html
http://www.thelaboroflove.com/forum/loss/sr.html
Spina Bifida Information
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http://www.ibis-birthdefects.org/start/ntdfact.htm#meningocele (I.B.I.S. - Spina Bifida Links)
http://www.sbaa.org/site/PageServer?pagename=about_sb (Spina Bifida Association - Information)
http://www.waisman.wisc.edu/~rowley/sb-kids/index.htmlx (Children with Spina Bifida - Resources
Tetraploidy (4 sets of chromosomes)
http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome213.html
Thanatophoric Dysplasia
http://ghr.nlm.nih.gov/condition=thanatophoricdysplasia (Information - Recommended)
http://www.emedicine.com/ped/topic2233.htm (Information)
http://www.medterms.com/script/main/art.asp?articlekey=9728 (Information)
Triploidy Syndrome
http://health.yahoo.com/ency/healthwise/nord710 (Information)
http://www.geocities.com/Heartland/1720/triploidy1.html (What is Triploidy)
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Triploid%20Syndrome (Information)
http://www.urmc.rochester.edu/path/pedspath/peds3.htm (Information - warning - reading may be graphic)
http://www.webmd.com/hw/raising_a_family/nord710.asp (Triploid Syndrome)
Tricuspid Atresia
(absence of connection between right atrium and right ventricle)
http://www.emedicine.com/med/topic2313.htm (Information)
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/ta.html (Information - Recommended)
http://www.pediheart.org/parents/defects/triatr.htm (Information)
Trisomy 13 Information (Patau Syndrome)
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http://www.cafamily.org.uk/Direct/p12.html (Information and support)
http://www.livingwithtrisomy13.org/prenatal-diagnosis-of-trisomy-13.htm (Pro-Life Support for living with T-13)
http://www.members.optushome.com.au/karens/ (T-18 and T-13 Pro-Life Support and Information)
http://www.trisomy.org/html/trisomy_13_facts.htm (Trisomy 13 Facts - Recommended)
Trisomy 15 Information (Angelman Syndrome and Prader Willi Syndrome)
http://www.angelman.org/angel/index.php?id=75 (Information about Angelman syndrome - Recommended)
http://www.medgen.ubc.ca/wrobinson/mosaic/trisomy15.htm (Trisomy 15 Definitions)
http://www.medhelp.org/forums/maternal/archive/2116.html (T-15 Forum Post - Informational)
http://www.pwsausa.org/syndrome/index.htm (Information about Prader-Willi syndrome - Recommended )
Trisomy 18 Information (Edward’s Syndrome)
http://www.chromosome18.org/Genetics/Facts.aspx (Chromosome 18 Registry & Research)
http://www.graceannenugent.netfirms.com (Created by a Mom of a child with T-18, supports CTT)
http://www.trisomy.org/trisomy18.php (Trisomy 18 Facts - Recommended)
http://www.trisomy18support.org (Trisomy 18 Foundation - Family Support)
Trisomy 21 Information (Down Syndrome)
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http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus5536 (BC Down syndrome Pregnancy Board)
http://specialneedschildren.bellaonline.com (Special Needs information, resources and support)
http://www.downsyn.com/resources.html (Living with Down syndrome Resources)
http://www.ds-health.com/ (Information by Len Leshin, MD - Recommended)
http://www.ds-health.com/ds_sites.htm (Recommended Down Syndrome Sites on Internet)
http://www.ds-health.com/trisomy.htm (The Story of Down Syndrome)
http://www.mayoclinic.com/health/down-syndrome/DS00182/DSECTION=3(Down syndrome Information Mayo Clinic)
http://www.nas.com/downsyn/ (Down syndrome Information and links)
http://www.ndss.org/ (National Down Syndrome Society Website)
http://www.ob-ultrasound.net/xdown.html (Ultrasound measurements for Down syndrome)
Trisomy 22 (Cat Eye Syndrome (partial 22)
http://www.nt.net/a815/learn.htm (List of T-22 related syndrome boards)
http://www.nt.net/~a815/fullt22.htm (T-22 Information and links)
Turner Syndrome Information
http://rarediseases.about.com/cs/turnersyndrome/a/020803.htm (Information - Links at bottom)
http://www.bbc.co.uk/health/conditions/turnerssyndrome1.shtml (Information)
http://www.nlm.nih.gov/medlineplus/ency/article/000379.htm (Description, Information)
http://www.pediatriconcall.com/forpatients/CommonChild/turner_syndrome.asp (Information - Recommended)
http://www.turnersyndrome.ca/ (Turner Syndrome Society, Canada)
http://www.turner-syndrome-us.org/ (Turner Syndrome Society, US)
Twin to Twin Transfusion Syndrome
http://www.tttsfoundation.org/ (Information, Support)
http://www.twin2twin.org/Research05.htm (Information, Links)
http://www.fetalhope.org/ (Information, Support)
http://p198.ezboard.com/btheofficialtwintotwintransfusionsyndromemessageboard (Support Board)
VACTERL Syndrome (aka VACTERL Association or VATER)
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http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/syndrome/vacterl.htm (Information)
Ventriculomegaly
http://forums.obgyn.net/pregnancy-birth/P-B.0002/0567.html(Women's Forum)
http://www.medcyclopaedia.com/library/topics/volume_vi_1/v/ventriculomegaly.aspx?s=VENTRICULOMEGALY&scope=&mode=1 (Description)
http://www.obfocus.com/questions/qanda10.htm (Information)
http://www.wcox.com.au/minimal1.htm (Information - Recommended)
OTHER SITES AND LINKS:
Afghans For Angels
http://www.afghansforangels.net/
Clinics that offer information for termination for medical reasons:
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http://www.drhern.com/ (Boulder abortion clinic)
http://www.choicemedicalgroup.com/our_services_special.htm (Choice Medical Group, California)
http://www.hopeclinic.com/MedicalReasons.htm (Hope Clinic, Illinois)
Banking Milk
http://www.breastfeeding.com/all_about/all_about_milk_banks.html
http://www.cnn.com/1999/HEALTH/women/12/23/breast.milk.angles.wmd/
http://www.hmbana.com/
Folic Acid Information
Abnormal folate metabolism and mutation in the methylenetetrahydrofolate reductase gene may be maternal risk factors for Down syndrome
http://www.babycenter.com/refcap/476.html (Baby Center Editorial)
http://www.circ.uab.edu/Folate/folic.htm (Information and Links)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12711468&dopt=Abstract (Link between DS and Folic Acid?)
http://www.ibis-birthdefects.org/start/ntdfact.htm#fa (Links)
http://www.waisman.wisc.edu/~rowley/sb-kids/Sb_folic.html (Links)
Genetics Counseling sites:
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http://www.nsgc.org/
Information regarding HCG levels (pregnancy hormone)
http://www.advancedfertility.com/earlypre.htm
http://www.birth.com.au/class.asp?class=6620&page=8#blood
http://www.bobrow.net/kimberly/birth/hcglevels.html
http://www.hcglab.com/hCG%20levels.htm
http://www.ivfer.com/hcg.htm
http://www.parentsplace.com/expert/midwife/qas/0,10338,239037_100655,00.html
Medline "PubMed"
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http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed
Main Medline database
http://medlineplus.gov/
Sites to offer support for loss
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus4293 (Termination for Medical Reasons Board)
http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus3376 (Miscarriage, Stillbirth, and Infant Loss Board)
http://perinatalhospice.org (Continuing a fatal or terminal pregnancy)
http://www.aheartbreakingchoice.com/ (Grief Support for terminating a much wanted pregnancy)
http://www.compassionatefriends.org/ (Grief Support After the Death of a Child)
http://www.empty-cradles.com (Miscarriage, Stillbirth, Infant Loss, SIDS, Infant Memorials)
http://www.misschildren.org/ (Providing crisis support after the death of a child from any cause)
http://www.nationalshare.org/ (Pregnancy and Infant Loss Support, Inc.)
Websites of hospitals that specialize in fetal surgery
http://www.childrenshospital.org/az/Site891/mainpageS891P0.html (Boston Children’s Hospital)
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81146 (Children’s Hospital of Philadelphia)
http://www.ucsfhealth.org/childrens/medical_services/fetal_treatment/
http://www.vanderbiltchildrens.com/interior.php?mid=2603 (Fetal Diagnosis and Therapy at Vanderbilt University Medical Center)
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