My sister's unborn baby was diagnosed with Acrofacial Dysostosis, Rodriguez Type, in utero. She is devastated by the news and shocked that the doctors she has been seeing are in fact advising her to "terminate" the pregnancy, which she doesn't want to do. Can you please help with any information about this condition? What is the prognosis for babies born with Acrofacial Dysostosis, Rodriguez Type?
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Did your sister have her baby? My daughter was born June 17th, 2011 and has been diagnosed with Acrofacial Dysostosis type Rodriguez. I have been told that she is the only known surviving person with this syndrome. As you may already know, there is hardly any information available since there have been very few cases. It would be helpful to speak with someone that is going through what my family has been going through. Although the past year has been a struggle, I would do it all over again just to see my baby girl's smile. She is a fighter for sure:)
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