I am currently 35 weeks pregnant with my son, who was diagnosed with BWS at 18 weeks. He initially had an omphalele/examphalos, but this cured itself. Since then the scans have shown his abdomen to be way ahead of the rest of his growth. The last scan showed his length and weight way above the 90th percentile. The last weight measurement put him above 7lb at 33 weeks pregnancy.
I am really hoping that some of you may have been in a similar situation and can help share your experiences. He's been diagnosed with UPD BWS from an amniocentesis. I am just about to see a more specialist hospital as I wasn't happy with the normal NHS hospital's treatment and lack of knowledge (eg I kept having to tell them why they were doing scans etc!)
Hi there,
No I didn't find out about my son's BWS until he was born (although we knew he had an exomphalos and that therefore it was a possibility). I guess forewarning is good as you can research a little bit before he arrives. The scan weights for our son varied so much depending on how accurate the sonographer was with the measurements, so I tried not to worry too much about his size (he ended up being 8 lb 5 at 40 weeks). I don't know whether the different variants of BWS have differences in size though (my son does not have UPD).
I hope you have better luck with your specialist hospital - the only advice I have is to please make sure they know to test your son's glucose level as soon as he is born as that is a common occurrence in BWS and must be treated as soon as possible. Good luck !