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Rachel Sonnier
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Question for Heart Moms
Rachel Sonnier
member
Hi,
I posted here about Williams Syndrome yesterday, but I still wasn't able to find the info that I am looking for, but I have a feeling that some of you may know.
Do you know of any hospitals/surgeons in the US who are specialized in treating (or treat often) these cardiac abnormalities:
pulmonary valve stenosis
pulmonary artery stenosis
supravalvular aortic stenosis
narrowing of the main coronary artery
renal artery stenosis
My daughter's first cath was Tuesday and it was supposed to be to attempt to balloon of the pulmonary valve, which is all that her echoes really showed was wrong. However, they came out of the cath lab saying that they couldn't even attempt the balloon and that she has all of the above issues, and that she would need a long, complex surgery sometime within the next few weeks to attempt to repair some of this.
So, now that we have had our minds blown, we are trying to figure out which hospitals/surgeons would be best to handle this constellation of heart issues.
I would really appreciate any info/experience/advice you guys have regarding this.
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Re: Question for Heart Moms
Four years later, I can honestly say they saved my son's life, and I trust them completely. Both my boys are followed routinely by the cardiology unit, but the surgery was such an overwhelming success, none of the possible complications presented, and M is a healthy, strong-as-a-horse, growing-like-a-weed boy.
As scary an experience it was, we were as comfortable as possible at CHOP, and their child life staff was excellent at explaining everything to M and putting him at ease. This was no small feat, as he was only in the US for two weeks and didn't speak English, but they did a stellar job. I would recommend them without hesitation.
I've been off of the boards since we came home with our sweet girl. She def keeps me busy!
We may have to have another cath to expand the pulmonary artery close to her lungs because they couldn't reach that far during surgery.
We have been focusing on the heart now and haven't started researching too much in williams. What has been your experience so far with williams? Have you started any therapy?
I am so glad you guys liked Texas Children's! What all did they fix during her surgery, and who was the surgeon? Although I wouldn't wish this on anyone, I'm glad to have found someone else in the same boat. I was starting to think she was the only one.