SVAS and why Google Analytics is awesome

So, why is Google Analytics awesome? Because it informed me that people have visited this blog after searching “how serious is Supravalvular Aortic Stenosis.” This blog is actually listed on the first page of results for that particular search. And after seeing this, I realized that the last time I posted anything about that was when we first got the diagnosis, and this made me realize its time for an update.

I know how scary it is when you get a diagnosis, and all you see out there are the tragic stories, or the cold medical jargon. I hope this helps provide an alternative view point from someone with a much more hopeful story :)

Maggie got her diagnosis this time last year after her pediatrician heard a heart murmur, which lead to an echo (SVAS found), which lead to the suspicion of Williams Syndrome, which lead to a FISH test at the genetic center to confirm WS. Since that first echo, Maggie has had an echo once every 6 months. She’s goes back for her next echo next week. She has never had to have a sedated echo, but I attribute that to the fantastic pediatric cardiology team that she sees. There are really wonderful, and super fast.

Maggie’s SVAS is very mild. Her cardiologist told us when it was first diagnosed that its just bad enough that its there at all. This means that she has a very slight narrowing. He said that it may be like this the rest of her life, it may get worse and require open heart surgery, or it may go away completely. There’s no way to know. She will always have to have it monitored regularly, even if it does appear to “go away.” But, if it stays like this, she should never have to worry about limited activity or anything like that.

For children who have severe SVAS, open heart surgery is usually necessary. Maggie’s cardiologist told us that the procedure is not really complicated, and that there is a very high success rate for it, so I assume the problem is usually mostly fixed with surgery, if not completely fixed.

At her last echo in the fall, there had been no change, and if its still barely there this time, we may be able to go in for the echos once a year now instead of twice a year. I’m hoping that when we go back, it will not have changed for the worse, or maybe have even changed for the better. We’ll be praying and keeping our fingers crossed, and I’ll update once we get the results.

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2 Responses to “SVAS and why Google Analytics is awesome”

  1. noel Says:

    I hope that things stay good for you guys. To hear Mild is a wonderful thing!
    Abi’s reached severe at the age of 3 and after open heart 2.5 years ago it has stayed at mild-moderate since. The hope is that if she grows slowly they will not have to repair it agin in an open heart proceedure. The hope is that by the time she needs it “fixed” again there will be so many new advancements that they can do it without it being an open heart surgery.

  2. Deepa Says:

    Hi,
    Its great to see that Maggie’s SVAS is not so bad. My son has SVAS and pulmonary artery stenosis. He was tested negative for Williams at the age of 6 weeks after a FISH test. I am looking for pediatric surgeons who have handled such cases. I have been unable to find specific names. Can you help me?

    Thanks
    Deepa

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