Before Diagnosis (Part 1) - Williams Syndrome

Before Diagnosis (Part 1) - Williams Syndrome

Ava Ann Newborn Picture

We had NO idea that Ava was born with Williams Syndrome. None. I mean...we had a couple of issues when she was born, but nothing too alarming. She weighed 7'11" - 1 oz more than her big sister Stella, and from what I've gathered, a substantial WS baby.

She was born fast...within 6 hours of checking in and just 3 quick pushes.  It was because of her fast delivery that she had some bruising from the "fast decent down the birthing canal". This led to jaundice & her levels were enough to make us use a bilirubin blanket (which we took home for a couple of days too). But even after all of this, we were still not alarmed.

Her belly button didn't heal fast when we came fact we had to have it cauterized a few extra times, but still not alarmed. After 6 weeks of nursing, we had to quit. I was devastated - in fact it still hurts to this day. I wanted nothing more as a pre-mom to have the ability to nurse my babies...I didn't realize then how there were even more important things to wish for.

Anyways, for some reason I just wasn't producing enough milk. I blamed it on my autoimmune issues (Hashimoto's & Psoriasis) but maybe it was the low sucking I've read about? Or perhaps it was both. (As you can see I'm still struggling with why I had to quit nursing).

One thing I DO know is that Ava was pretty fussy as a newborn. She was.just.not.happy. She cried all the time, was never content, and very unhappy to say the least. Everyone just said it was colic, but to me it lasted awhile...about 10 long months actually. Gosh she was hard. Really hard. She wouldn't sleep longer than a couple hours at a time & constantly whined & cried. I just didn't get it. People looked at me like I was over exaggerating her fussiness, forgetting that this wasn't my first child. I remember feeling so defeated. So frustrated & so alone. But now I know something I didn't know back then: it's typical for WS babies to be colicky - and to have it longer than the normal timeframe. So now we know. Now it makes sense. And most importantly now I know I wasn't crazy - Ava really was a hard baby...but thank God we've turned a corner and are past that!

Ava Crown Picture

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1 comment

This is a great resource. I think it is so important to share more about the importance of genetic counseling,, as a part of the diagnosis process. The journey to reaching a diagnosis, is so much longer and so much more difficult when quality genetic counseling services are not available, or lacking.

Suie Leyes

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