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Genetic and Rare Diseases Information Center (GARD)

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Fetal retinoid syndrome

Other Names for this Disease
  • Accutane fetal effects of
  • Accutane-exposed pregnancies
  • Acutane embryopathy
  • Isotretinoin (RoAccutane) embryopathy
  • Isotretinoin embryopathy
More Names
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Your Question

My daughter has fetal retinoid syndrome. Where can I find information on what to expect throughout her lifetime?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is fetal retinoid syndrome?

Fetal retinoid syndrome is a characteristic pattern of physical and mental birth defects that results from maternal use of retinoids during pregnancy. The most well known retinoid is isotretinoin (Accutane), a drug used to treat severe cystic acne.[1] Birth defects associated with fetal retinoid syndrome include: hydrocephalus, microcephaly, intellectual disabilities, ear and eye abnormalities, cleft palate and other facial differences, and heart defects.[1][2] Isotretinoin can cause these birth defects in the early weeks of pregnancy, even before a woman knows that she is pregnant.[2]

Last updated: 4/12/2010

Where can I find information about what to expect as my child gets older?

Little is known about fetal retinoid syndrome and its long-term implications. However, case studies and other reports discussing the condition can be obtained through PubMed, a searchable database of biomedical journal articles. Although not all of the articles are available for free online, most articles listed in PubMed have a summary available. To obtain the full article, contact a medical/university library or your local library for interlibrary loan. You can also order articles online through the publisher’s Web site. Using "isotretinoin embryopathy" as your search term should help you locate articles. Use the advanced search feature to narrow your search results. Click here to view a search.

The National Library of Medicine (NLM) Web site has a page for locating libraries in your area that can provide direct access to these journals (print or online). The Web page also describes how you can get these articles through interlibrary loan and Loansome Doc (an NLM document-ordering service). You can access this page at the following link You can also contact the NLM toll-free at 888-346-3656 to locate libraries in your area.

Last updated: 4/9/2010