Parent Support Groups and Resources for Selected Birth Defects

Parent Support Groups and Resources for Selected Birth Defects

The information and resources listed are intended for educational use only and are provided solely as a service. The information provided should not be used for diagnosing or treating a health problem or disease, and is not a substitute for professional care.  These links do not constitute an endorsement of these organizations or their programs by the National Birth Defects Prevention Network (NBDPN) and none should be inferred. The NBDPN is not responsible for the content of the individual organization web pages found at these links.

Public Service Announcement (PSA) and Paper

from NBDPN Parent Advisory Group

• 
  NBDPN PAG Birth defects awareness public service announcement (PSA)
  

http://www.youtube.com/NBDPN

• 
  NBDPN PAG article, “Insights from Parents about Caring for a Child with Birth Defects”
  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3774449
Central Nervous System

Anencephalus/Anencephaly

• 
  CDC’s Anencephaly page
  

http://www.cdc.gov/ncbddd/birthdefects/anencephaly.html

• 
  Medline plus: Anencephaly
  

http://www.nlm.nih.gov/medlineplus/ency/article/001580.htm

• 
  Anencephaly Net
  

http://www.anencephaly.net/

• 
  Yahoo Support Group
  

http://health.groups.yahoo.com/group/anencephaly/

• 
  Anencephaly Information
  

http://www.anencephalie-info.org/e/index.htm

Spina bifida

• 
  Spina Bifida Association of America (SBA)
  

http://www.sbaa.org/

• 
  CDC’s Spina Bifida pages
  

http://www.cdc.gov/ncbddd/spinabifida/index.html

• 
  Medline Plus: Spina Bifida
  

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Having a Baby with a Birth Defect:

A mom’s thoughts
At 19 weeks of her second pregnancy, Julie Mayberry and her husband were excited because they were having an ultrasound to learn the sex of their second child. They never imagined the test would reveal anything more dramatic; however, the Mayberry's were told their baby would be born with spina bifida.
The Mayberry's daughter was born December 26, 2001. She is now 13 years old and has enjoyed "dancing" with the help of her wheelchair since the age of 3, inspiring other children with disabilities to dance as well. Katie is a straight "A" student who also plays baseball, soccer, takes music classes, sings in the church choir, and goes to a spina bifida camp each summer.
There is nothing she has wanted to do, that we haven't been able to get her to do with some modifications. "Do I wish she did not have spina bifida and could run and play like other children? Yes. Life is tough for her. Simple things like pulling up her own pants can take a half-hour. She has had 15 surgeries and numerous hospitalizations because of infections," says Julie. "But our family has learned to appreciate the small things in life more. She has been a blessing to our family."
"I encourage other women to take 400 micrograms of folic acid if you are able to get pregnant, even if you are not planning a pregnancy. Studies have shown that it can help prevent spina bifida in many cases," said Julie. "If you've already had a child with a neural tube defect, it is recommended you take 4,000 micrograms of folic acid. That's what I did, and my next two children were not born with spina bifida."

Note: We thank Julie for giving us permission to share her family story

Note: We thank Julie for giving us permission to share her family story.

ttp://www.nlm.nih.gov/medlineplus/spinabifida.html

• 
  SB-Parents
  

http://health.groups.yahoo.com/group/SB-Parents/

• 
  Children with Spina Bifida: A Resource Page for Parents
  

www.waisman.wisc.edu/~rowley/sb-kids/

• 
  Spina Bifida Association - St. Louis
  

http://www.sbstl.com/

Hydrocephalus

• 
  Hydrocephalus Association
  

http://www.hydroassoc.org/

• 
  Hydrocephalus Groups http://health.groups.yahoo.com/group/HydroParents/
  
• 
  Hydrocephalus Groups http://health.groups.yahoo.com/group/hydrocephalus/
  

Encephalocele

• 
  Children's Craniofacial Association
  

http://www.ccakids.com/

• 
  FACES The National Craniofacial Association
  

http://www.faces-cranio.org/

• 
  Fighters for Encephaly Defects Support (FEDS)
  

[phone]

Microcephalus/Microcephaly

• 
  Microcephaly Group
  

http://groups.yahoo.com/group/microcephaly/

Email: [e-mail]

• 
  Mild Micro Group
  

http://groups.yahoo.com/group/mildmicro/
Eye

Anophthalmia/Microphthalmia

• 
  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

Congenital cataract

• 
  Congenital Cataract
  

http://www.qualityhealth.com/health-encyclopedia/multimedia/congenital-cataract

• 
  Cataracts Support Group
  

http://www.drugs.com/answers/support-group/cataract/

• 
  Cataracts Support Group
  

http://www.dailystrength.org/c/Cataracts/support-group

Aniridia

• 
  Aniridia Foundation International
  

http://www.aniridia.net/

• 
  Aniridia Foundation International Facebook
  

http://www.facebook.com/pages/Aniridia-Foundation-International/183649933901

• 
  Aniridia Network
  

http://aniridia.org/

Cardiovascular

• 
  Congenital Heart Information Network
  

http://tchin.org/

• 
  Little Hearts
  

http://www.littlehearts.org/

• 
  National Association for Children’s Heart Disorders (NACHD): Kids With Heart
  

http://kidswithheart.org/

• 
  Congenital Heart Defect Group
  

http://health.groups.yahoo.com/group/congenitalheartdefectsupport/

• 
  It's My Heart
  

http://www.itsmyheart.org/index.php?option=com_content&view=article&id=137&Itemid=311

• 
  American Heart Association
  

http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/Congenital-Heart-Defects_UCM_001090_SubHomePage.jsp

• 
  Mended Little Hearts
  

http://www.mendedlittlehearts.org/chdresources.shtml

• 
  Cove Point Foundation
  

http://www.pted.org/

• 
  The Heart Institute for Children
  

http://hope-pediatrics.com/hope/node/152

• 
  CDC’s Heart Defect website
  

http://www.cdc.gov/heartdefects

• 
  Medline Plus: Congenital Heart Defects
  

http://www.nlm.nih.gov/medlineplus/congenitalheartdefects.html

Common truncus

• 
  HeartPoint
  

http://www.heartpoint.com/congtruncus.html

• 
  CDC’s Truncus Arteriosus webpage
  

http://www.cdc.gov/ncbddd/heartdefects/truncusarteriosus.html

Transposition of great arteries

• 
  HeartPoint
  

http://www.heartpoint.com/congtranspos.html

• 
  CDC’s d-Transposition of the Great Arteries webpage
  

http://www.cdc.gov/ncbddd/heartdefects/d-tga.html

Tetralogy of Fallot

• 
  HeartPoint
  

http://www.heartpoint.com/congtetralogy.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001567.htm

• 
  National Heart Lung and Blood Institute
  

http://www.nhlbi.nih.gov/health/health-topics/topics/tof/

• 
  CDC’s Tetralogy of Fallow webpage
  

http://www.cdc.gov/ncbddd/heartdefects/tetralogyoffallot.html

Ventricular septal defect

• 
  HeartPoint
  

http://www.heartpoint.com/congvsd.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001099.htm

• 
  CDC’s Ventricular Septal Defect webpage
  

http://www.cdc.gov/ncbddd/heartdefects/ventricularseptaldefect.html

Atrial septal defect

• 
  HeartPoint
  

http://www.heartpoint.com/congasd.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/000157.htm

• 
  Atrial Septal Defect Survivors
  

http://atrialseptaldefectsupport.org/

Facebook: http://www.facebook.com/asdsurvivors

• 
  CDC’s Atrial Septal Defect webpage
  

http://www.cdc.gov/ncbddd/heartdefects/atrialseptaldefect.html

Atrioventricular septal defect (endocardial cushion defect)

• 
  CDC’s Atrioventricular Septal Defect webpage
  

http://www.cdc.gov/ncbddd/heartdefects/avsd.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/007324.htm

Pulmonary valve atresia and stenosis

• 
  American Heart Association
  

http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Pulmonary-Valve-Stenosis_UCM_307034_Article.jsp

• 
  Medline plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001091.htm

Tricuspid valve atresia and stenosis

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001110.htm

Ebstein anomaly

• 
  HeartPoint
  

http://www.heartpoint.com/congepstein.html

• 
  American Heart Association
  

http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Ebsteins-Anomaly_UCM_307025_Article.jsp

Aortic valve stenosis

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/000178.htm

• 
  Mayo Clinic
  

http://www.mayoclinic.com/print/aortic-valve-stenosis/DS00418/DSECTION=all&METHOD=print

Hypoplastic left heart syndrome

• 
  Children with HLHS
  

http://health.groups.yahoo.com/group/childrenwithhlhs/

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001106.htm

• 
  CDC’s Hypoplastic Left Heart Syndrome webpage
  

http://www.cdc.gov/ncbddd/heartdefects/hlhs.html

Patent ductus arteriosus

• 
  HeartPoint
  

http://www.heartpoint.com/congpda.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/001560.htm

Coarctation of aorta

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/000191.htm

• 
  CDC’s Coarctation of the Aorta webpage
  

http://www.cdc.gov/ncbddd/heartdefects/coarctationofaorta.html

Anomalous pulmonary venous return

• 
  American Heart Association
  

http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Total-Anomalous-Pulmonary-Venous-Connection-TAPVC_UCM_307039_Article.jsp

• 
  CDC’s Total Anomalous Pulmonary Venous Return webpage
  

http://www.cdc.gov/ncbddd/heartdefects/tapvr.html
Orofacial

Cleft palate, cleft lip

• 
  Cleft Palate Foundation
  

http://www.cleftline.org/

• 
  Children's Craniofacial Association
  

http://www.ccakids.com/

• 
  American Cleft Palate-Craniofacial Association (ACPA)
  

http://www.acpa-cpf.org/

• 
  Pierre Robin Network
  

http://www.pierrerobin.org/

• 
  CleftClub.com
  

http://health.groups.yahoo.com/group/cleftclub/

• 
  Cleft Talk
  

http://groups.yahoo.com/group/cleft_talk/

• 
  Wide Smiles
  

http://www.widesmiles.org/

• 
  Cleft Chat
  

http://health.groups.yahoo.com/group/cleftchat/

• 
  FACES
  

http://www.faces-cranio.org

• 
  Cleft Lip and Palate Association
  

http://www.clapa.com/

• 
  CDC’s Cleft Lip and Cleft Palate webpage
  

http://www.cdc.gov/ncbddd/birthdefects/cleftlip.html

Choanal atresia

• 
  Children’s Choanal Atresia Foundation
  

http://choanalatresia.org/aboutccaf.html
Gastrointestinal

Esophageal atresia, tracheoesophageal fistula

• 
  EA/TEF Support Connection
  

http://www.eatef.org/

• 
  Tef Vater Website
  

http://www.tefvater.org/index2.html

Rectal and large intestinal atresia/stenosis

Imperforate Anus

• 
  IA (Imperforate Anus) Parents Support Group
  

http://health.groups.yahoo.com/group/IA-parents/

• 
  Rainbow Kids
  

http://specialneedsadoption.rainbowkids.com/Anal_Atresia_-_Imperforate_Anus.aspx

• 
  Pull-Through Network
  

http://www.pullthrunetwork.org/

Pyloric stenosis

• 
  Pyloric Stenosis Support
  

(www.cafemom.com/group/113668)

• 
  American Pediatric Surgical Association
  

http://www.pediatricsurgerymd.org/Pyloric_Stenosis/4218.htm

• 
  Infant Reflux Disease
  

http://www.infantrefluxdisease.com/forums/

Hirschsprung disease (congenital megacolon)

• 
  National Digestive Diseases Information Clearinghouse (NDDIC)
  

http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/

• 
  National organization for Rare Diseases (NORD)
  

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/727/viewAbstract

• 
  The Mayo Clinic
  

http://www.mayoclinic.com/health/hirschsprungs-disease/DS00825

Biliary atresia

• 
  American Liver Foundation
  

http://www.liverfoundation.org/abouttheliver/info/biliaryatresia/

• 
  Biliary Atresia Network
  

http://health.groups.yahoo.com/group/BiliaryAtresiaNetwork/
Genitourinary

Renal agenesis/hypoplasia

• 
  Potter's Syndrome
  

http://www.potterssyndrome.org/

• 
  National Kidney Foundation
  

http://www.kidney.org

• 
  American Association of Kidney Patients
  

http://www.aakp.org

• 
  NIH/National Institute of Diabetes, Digestive & Kidney Diseases
  

http://kidney.niddk.nih.gov/

Bladder exstrophy

• 
  Association for Bladder Exstrophy Community
  

http://www.bladderexstrophy.com/

• 
  The Pull-Thru Network
  

http://www.PullthruNetwork.org

• 
  Children's Hospital Boston
  

http://www.childrenshospital.org/az/Site856/mainpageS856P0.html

Obstructive genitourinary defect

• 
  healthetreatment's Obstructive Genitourinary Defect community
  

http://www.healthetreatment.com/community/obstructive-genitourinary-defect/

• 
  National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
  

http://kidney.niddk.nih.gov/kudiseases/pubs/newborns/

Hypospadias

• 
  CDC Hypospadias page
  

http://www.cdc.gov/ncbddd/birthdefects/hypospadias.html

• 
  Hypospadias and Epispadias Association
  

http://www.heainfo.org/

Musculoskeletal

Limbs

• 
  Helping Hands Foundation
  

http://www.helpinghandsgroup.org/

• 
  Superhands Network
  

http://www.superhands.us/

• 
  STEPS
  

http://www.steps-charity.org.uk/

• 
  Limb Differences
  

http://limbdifferences.org/

• 
  Adams Oliver Syndrome Support Group
  

Email: [e-mail]

• 
  AOSupport
  

http://www.aosupport.org/

Gastroschisis

• 
  Avery's Angels
  

http://www.facebook.com/averysangels#!/photo.php?fbid=10151175942114874&set=a.10150789513484874.464836.243044679873&type=1&theater

• 
  GEEPS
  

http://www.geeps.co.uk/gastroschisis.htm

• 
  American Pediatric Surgical Association
  

http://www.pediatricsurgerymd.org/Gastroschisis/4201.htm

• 
  Gastroschisis Support Group
  

http://www.gastroschisismiracles.webs.com/

• 
  CDC’s Gastroschisis webpage
  

http://www.cdc.gov/ncbddd/birthdefects/gastroschisis.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/000992.htm

Omphalocele

• 
  CDC’s Omphalocele webpage
  

http://www.cdc.gov/ncbddd/birthdefects/omphalocele.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/ency/article/000994.htm

Congenital hip dislocation

• 
  Gillette Children's Specialty Healthcare
  

http://www.gillettechildrens.org/conditions-and-care/developmental-dysplasia-of-the-hip-ddh/

• 
  Baby Center
  

http://community.babycenter.com/post/a25941553/congenital_hip_dislocation_anyone

Congenital diaphragmatic hernia

• 
  CHERUBS
  

http://www.cherubs-cdh.org/

• 
  Support Group
  

http://groups.yahoo.com/group/cherubs/
Chromosomal

Trisomy 13 & Trisomy 18

• 
  Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
  

http://www.trisomy.org/

• 
  Trisomy 18 (Edwards syndrome) Chromosome 18
  

http://www.chromosome18.org/

Down syndrome (Trisomy 21)

• 
  National Down Syndrome Congress
  

http://www.ndsccenter.org/

• 
  National Association for Down Syndrome
  

http://www.nads.org/

• 
  Kids Health
  

http://kidshealth.org/parent/medical/genetic/down_syndrome.html

• 
  The National Down Syndrome Society
  

http://www.ndss.org/

• 
  CDC’s Down Syndrome webpages
  

http://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html

• 
  Medline Plus
  

http://www.nlm.nih.gov/medlineplus/downsyndrome.html

Fetal Alcohol Syndrome Disorders (FASD)

Fetal alcohol syndrome

• 
  Family Resource Institute
  

http://www.fetalalcoholsyndrome.org/

• 
  FAS Forum
  

http://health.groups.yahoo.com/group/FASForum/

• 
  FAS Link
  

http://www.acbr.com/fas/faslink.htm

• 
  The Family Empowerment Network (FEN)
  

http://www.pregnancyandalcohol.org/

• 
  Fetal Alcohol and Drug Unit (FADU)
  

http://www.depts.washington.edu/fadu/

• 
  Fetal Alcohol Spectrum Disorders (FASD)
  

http://www.fasdcenter.samhsa.gov/

• 
  Fetal Alcohol Syndrome Consultation, Education and Training Services (FASCETS)
  

http://www.fascets.org/

• 
  CDC’s Fetal Alcohol Spectrum Disorders webpage
  

http://www.cdc.gov/ncbddd/fasd/index.html
Amniotic Bands

Amniotic bands

• 
  Amniotic Band Syndrome
  

http://www.amnioticbandsyndrome.com/

• 
  Superhands Network
  

http://www.superhands.us/