Anyone who found out about BWS during pregnancy?

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!)

6 Replies

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  • 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 !

  • Hi,

    My daughter has UPD. She is now 4 1/2.

    During my pregnancy, she was scanning very large. I was referred for growth scans at 24 weeks, and had these every 2 weeks. At 37 weeks, a consultant mentioned BWS to us, and suggested I had a CSection. She was born at 37+5 weighing 11lb!

    She also has Hyperinsulinism which causes persistant hypoglycemia. I understand this is more common in UPD than other types of BWS.

    She was born at our local hospital, and spent 6 weeks in NICU/SCBU before being transferred to Great Ormond St.

    Where do you live? Are you in the UK?

  • Hi. Thanks both for the answers. Yes, I am in the UK and based in the midlands. I'm being seen by Birmingham Women's Hospital. They've told me that the baby will go straight into neo-natal when he is born so that they can monitor his blood sugar levels (and if there were any other issues).

    I am not being seen again until I am 38 weeks although its going to be another scan and then they'll decide on "birthing options". On the scan on Wednesday he measured 8lb 9oz (at 35 weeks), which is a little eye watering a prospect!

    I feel a bit better about things having been to the women's hospital as they seem to know what they're doing and I'm glad I swapped from my local hospital.

    Fingers crossed it all goes well from here :)

  • We found out by 12 wks that out baby had an omphalocele, but it wasn't until about tge 5tth month that the specialists agreed she had high chance if having bws. Also a lot of bws babies come early too (i was 36 wks) so you may possibly want a birth plan sooner rather than later.

  • Thanks for the reply. I'm now 37 weeks and no sign of him coming yet, although he's already bigger than most full term babies. I'm more than a little nervous about how he's going to get out!!! How is your little one doing? Did you have any problems after birth?

  • Hi my son was diagnosed whilst I was pregnant he had an exhomphalos large kidneys lots of fluid and a big tongue. We were booked in for a section at 37 weeks but he came at 32 weighing 6.12lb, he had surgery straight away.

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