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rachel
rachel
Мама двоих (младенец)

Does Anyone Have a Child with Beckwith-Wiedemann Syndrome?

Does anyone have a child with Beckwith-Wiedemann Syndrome? Alivia is having genetic testing next week for it because she has a lot of the physical markers for it as well as neonatal hypoglycemia which kept her in the NICU for 9 days, and they’re going ahead and testing Jacob for it as well in case they missed some genetic abnormality with him as well, especially since he has such a harsh speech delay. If they both end up having something, then I’ll likely stop having kids because 2 for 2 is a pretty high number to risk trying for a third thinking maybe that one will come out without any abnormalities. :/

Anyway, here’s my sweet Livvy Bug today at two weeks old 🌼

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Beckwith-Wiedemann Syndromegenetic testingneonatal hypoglycemia

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rebecca33

rebecca Мама троих детей

@m0thmama hmm I'll look at my daughter closer all ik she had at least idk if still does is low blood sugar

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m0thmama

rachelМама двоих (младенец)

@s.rebecca52, what she has is a port wine stain on her eyelid, creased ear, enlarged tongue, >99% sized torso, abnormally large umbilical hernia, and low blood sugar... most of these are strong markers for BWS, and some of these are also soft markers for it as well.

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rebecca33

rebecca Мама троих детей

What exactly is the characteristics of it?

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AF due 29th, anyone else?

AF due 29th, anyone else? Hi all AF is due 29th Sept for me feels like forever away. Has anyone tested yet or when do you plan on testing x

on the 6th October I did 2 test with 2 lines , 3rd test was clear blue digital and was positive 2-3 weeks I was waiting…

on the 6th October I did 2 test with 2 lines , 3rd test was clear blue digital and was positive 2-3 weeks I was waiting for a month for a midwife appointment.. so yesterday I started bleeding went today for a scan and they go to me no sac .. but can see a cyst or a sac outside the womb so therefore she did another test there and it was negative .. she said if it was positive it would have been ectopic pregnancy but because it was negative she said it's miscarriage. Has anyone else been through this as am so confused ?? As some saying maybe I wasn't pregnant at all and it gave me positive results