Birth Defects

The following publications and organizations provide additional information on Birth Defects

Publications

1. A Guide to understanding Hunter Syndrome: MPS II (Copyright © NMPSS) - This consumer health information booklet discusses causes, types and diagnosis of this syndrome. Hunter syndrome is one of the mucopolysaccharide disorders.
   
   
2. A Guide to Understanding Morquio Syndrome: MPS IV (Copyright © NMPSS) - A consumer health information mini-fact sheet about this birth defect -- discusses causes, types and diagnosis. Morquio Syndrome is one of the mucopolysaccharide disorders.
   
   
3. Achondroplasia (Copyright © MOD) - This on-line fact sheet provides information about Achondroplasia. It also includes how it is caused, diagnosed, and treated. A list of additional resources is found at the end of the fact sheet.
   
   
4. Ask NOAH About Genetic Diseases: Down Syndrome (Copyright © NOAH) - This Internet site contains a wealth of information on down syndrome, including basic descriptions, causes, prenatal testing, physical development, complications, concerns, management, and therapy. It includes resources from all over the United States.
   
   
5. Children Who Are Mentally Retarded (Copyright © AACAP) - This fact sheet provides a brief overview of mental retardation, the importance of early diagnosis, treatment, and intervention. It addresses the physical, emotional, and behavioral complications associated with mental retardation.
   
   
6. Down Syndrome: Finding Out Your Child Has Down Syndrome (Copyright © AAFP) - This publication is directed towards parents whose child has recently been diagnosed with Down syndrome. It contains information on how to understand the biology behind the disorder, how to cope with lifestyle changes and what to expect as the child matures.
   
   
7.   EPA National Advice on Mercury in Freshwater Fish for Women Who Are or May Become Pregnant, Nursing Mothers, and Young Children - This on-line publication contains information on how mercury gets into fish, how to avoid levels of methyl mercury that can harm you or your child, and where to get more information.
   
   
8.   Facts About Fragile X Syndrome - This booklet is designed to give some general information about Fragile X syndrome, its causes, features, and treatments. This publication also describes some of the research directions currently underway to learn more about Fragile X.
   
   
9.   Folic Acid Now: Before You Know You’re Pregnant - This fact sheet explains the importance of getting enough folic acid during pregnancy and how it prevents birth defects.
   
   
10.   Folic Acid Now: Frequently Asked Questions - The purpose of these questions and answers is to educate women of childbearing age on the importance of consuming 400 micrograms of folic acid everyday. This, in turn, will reduce the risk of spina bifida by 50%-70%.
    
    
11.   Folic Acid Now: Questions and Answers - This fact sheet provides basic information in Q & A format on folic acid use and how it may prevent some birth defects.
    
    
12.   Highlights of FDA Food Safety Efforts: Fruit Juice, Mercury in Fish - This on-line publication discusses the strict rules imposed by the FDA through the HACCP (Hazard Analysis and Critical Control Point) principles, possible injury methyl mercury can cause in pregnant and nursing women, the bacterium, Listeria, and the safety of imported foods and eggs.
    
    
13. Need Help Putting Out That Cigarette? (Copyright © Smoke Free Families) - This booklet includes benefits of quitting for you and your baby, ways to prepare to quit, setting a quit date, how to handle "slips" and tips for after the baby is born.
    
    
14.   NINDS Landau-Kleffner Syndrome Information Page - This on-line publication reviews the treatment, prognosis, research, and resources pertaining to the Landau-Kleffner Syndrome (LKS). LKS, is a rare, childhood neurological disorder characterized by the sudden or gradual development of aphasia (loss of language) and an abnormal electro-encephalogram (EEG).
    
    
15.   Pregnancy Registries - Pregnancy Registries help women make informed and educated decisions about using medicines during pregnancy. If you are pregnant and currently taking medicine--or have been exposed to a medicine during your pregnancy--you may be able to participate and help in the collection of this needed information. This web site provides a list of pregnancy registries that are enrolling pregnant women.
    
    
16. Smoking During Pregnancy (Copyright © MOD) - This fact sheet explains the reasons why women should quit smoking during pregnancy. It also contains suggestions for how women can quit successfully and list helpful resources to contact for assistance with quitting.
    
    

Organizations

1. American Academy of Child and Adolescent Psychiatry
   
   
2. American Academy of Family Physicians
   
   
3. March of Dimes Birth Defects Foundation
   
   
4. National Association for Down Syndrome
   
   
5. National Birth Defects Center, The
   
   
6.   National Center on Birth Defects and Developmental Disabilities, CDC
   
   
7. National Down Syndrome Society
   
   
8.   National Heart, Lung, and Blood Institute Information Center, NHLBI, NIH, HHS
   
   
9.   National Information Center for Children and Youth with Disabilities, ED
   
   
10.   National Institute of Child Health and Human Development Clearinghouse, NICHD, NIH, HHS
    
    
11.   National Institute of Neurological Disorders and Stroke, NIH, HHS
    
    
12. National Neurofibromatosis Foundation
    
    
13.   National Women's Health Information Center, OWH, HHS
    
    
14.   Office of Genomics and Disease Prevention
    
    
15. Smoke Free Families: Innovations to Stop Smoking During and Beyond Pregnancy
    
    
16. Spina Bifida Association of America
    
    

= Indicates Federal Resources