My daughter's cardiologist has always suspected WS based on her pattern of heart defects. Our genetic testing is still pending, but they did a cath on Tuesday to attempt to balloon her pulmonary valve which they were unable to do. They came out of the cath lab saying that they found 8-9 different heart abnormalities and that they were 99% sure based on their findings that she has some form if WS.
They said she will need an open heart procedure soon to begin repairing things and as of right now her 3 cardiologists are trying to figure out what is the best course of action in her case. She's 5 months old.
I was just wondering if there were any WS moms here who could give some advice/direction. It seems that there aren't many hospitals/surgeons that deal with treating her specific constellation of defects.
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Fred are they from Michigan, or did they go there to specifically see someone special for his surgery? We know she needs a pretty complex surgery, and I'm trying to find out if there is anyone in the US who either specializes in treating WS heart cases, or who deals specifically with her types of defects.
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My daughter's geneticist strongly suspected that she had WS (she does not, but does have a different chromosome abnormality). While we were waiting for the results to come back, I found several wonderful WS moms on FB who were supportive and helpful. Search out closed WS groups on FB. I'm sure you'll find what you need there.
@EmAre do you mind me asking which factors made your geneticist think your daughter had WS?
Chronic GI issues, very small size, some dysmorphic features combined with her very outgoing personality and just her pixie-like appearance. Honestly, if you read the symptoms of WS and compare to her actual diagnosis of 16p11.2 deletion, she matches much more of the WS criteria than the 16p.
Re: Williams Syndrome?
Good luck. The little girl we know is nothing short of amazing, I know she has many heart issues and is in the hospital alot though.
We know she needs a pretty complex surgery, and I'm trying to find out if there is anyone in the US who either specializes in treating WS heart cases, or who deals specifically with her types of defects.
Hugs!
BFP 12/10/10 - DD1 8/16/11
BFP 10/29/13 - c/p 11/2/13
BFP 11/29/13 - DD2 7/18/14
BFP 3/20/18 - DS1 due 12/2/18