Anyone heard of Beckwith-Wiedemann Syndrome?
After being in the hospital overnight for a failed NST and Biophysical Profile Ultrasound - they found some findings on our ultrasound that are new and worrisome. Baby continues to grow at an alarming rate - estimated at 7/11 at this point, they also found enlarged kidneys, some fluid around his belly and intestines. I have a high level of amniotic fluid - which I was told was from my GD. However, the doctor was very persistant about getting a pic of his face after seeing baby stick his tongue in and out...we now know he was looking for - and found - an enlarged tongue.
All these things together lead us to a probable diagnosis of Beckwith-Wiedemann syndrome. We were switched to the high risk Doctor and we're told we will probably need to deliver via csection at the university hospital over an hour away. Apparently his airway is going to be a huge issue at birth.
We are shell shocked as everything was fine on 3d ultrasound just 2 weeks ago. We are scared, but also grateful that this just happened to be discovered before his birth, so he can be born in the right place with the right specialists. If anyone has any experience it would be greatly appreciated.
FET May 2010
ET 5/30 - transferred 3 embies = BFN
Fall/10 Went Gluten free + New RE and Clinic
IUI #1 + Clomid 50 mg (1 follie) on 1/18
IUI #2 + Clomid 100 mg (1 follie) on 2/15
IUI# 3 + Femara 7.5 mg (1 follie) on 3/14 = BFP!!!!
Beta #1 = 172 (15dpiui) Beta #2 =683!!!
Ultrasound at 7 wks: 1 perfect beating heart.
Re: Anyone heard of Beckwith-Wiedemann Syndrome?
Cerclage placed @ 21w6d due to CI (IC)
So sorry for your news. It's so hard to hear that everything isn't going as planned. It's even more difficult to feel alone as it's a pretty uncommon syndrome. The good news is that cognition is only mildly affected if at all. I'm sure you've been looking into information all over the place but I found a link for you just in case for the foundation page. There's a link for a free dvd with information and maybe you can get started on finding some support.
https://www.beckwith-wiedemannsyndrome.org