BWS - Beckwith-Wiedemann Syndrome

Nikkie916 · July 2012

If there are any parents who has a child with BWS, please take a few minutes to give me some encouraging words of strength! And if you have a little more time to spare, share a few words of advice on the pros & cons! Thank you, greatly appreciated!

And I'm only asking because I've been blessed with my son, first child, who has been diagnosed with BWS. He came 3 months early (26wks) we were in the nicu for 3 months 1week n 3 days to be exact! He's graduated and been home with us for a little over 2 months. Has had 2 surgeries already, and are expecting one more.

But when he reaches his gestational age, then they'll allow him to feed on solids.. What should I expect then? Was it difficult or fairly easy for your child to start eating solids..? What about speech and physical therapy? Sorry for multiple questions! But every thought n advice is more than appreciated! Thank you!

Jcrab · July 2012

Forgive me but I am a NICU RN and I dont even know what BWS is. Maybe it is a regional abbreviation or something extremely rare? You will probably get a better response if you write out what BWS is and / or explain it a little.

Nikkie916 · July 2012

Thanks for the advice.. But it's abbreviation stands for Beckwith-Wiedemann Syndrome! I'm not sure how truly rare it may be.. But we've been told its 1 in 15,000 kids who are born may have it! But signs of it are; omphalocele, enlarged tongue, markings on the ear lobe, over size birth weight, etc.. But kids with bws will need to be watched n monitored til they are 7-8yrs of age due to the fact that they can grow cancer/tumors in their kidneys and livers! and don't feel bad that you've never heard of it! Even the doctors whose seen him during an ER situation had no clue of what it wa and had to ask me to enlighten them!

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BWS - Beckwith-Wiedemann Syndrome

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