Hi my name is Sarah.  My daughter, Kali, was diagnosed with  Beckwith-Wiedemann Syndrome right after she was born on May 27,1999. This is the first web site that I have been able to find information on, and boy does it help.  Kali had the stork bite mark on her forehead, large tongue, ear creases, and omphalocele.  She was rushed to ..... from ....., NH where she was born. They immediately did the surgery and we were there for about a week.  And let me tell you that was the most horrible experience of my life.  It was my first child and my husband and I were only 20 at the time.  Her omphalocele ended up being rather small and the geneticist says she has a mild case of it. We got the genetic testing done up in Canada to only find out that everything is OK with us and that now they're looking for some kind of typo to find out the reason for it.  It bothers me that there are so many unanswered questions about this syndrome.  Like what will happen if she has children, will it happen to us again...etc.  Now we are dealing about her tongue.  It protrudes slightly but enough to make us worry about the tongue reduction which seems so awful and also the underbite problem that is showing up.  But what can you do?  For awhile I wanted to deny the geneticist decision.  She looked and was absolutely fine to me. We go  see the geneticist every 6 mths and get AFP tests and ultrasounds done every 3 mths. She is doing great and she is a blessing from god that she made it through. Again thank you for this web site. It has helped me a lot.

Sincerely Sarah and family
Pictures to come later

May 2001