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BWS Support
554 members • 185 posts

Beckwith widermann syndrome child

Hello and good morning friend,my name is ayu..i'm from malaysia..actually i just want to share about all my child have genetic disorder and it call beckwith widermann syndrome..i have experience 4 child with this genetic disorder..my first child pass away 17 days after deliver in 2012 because of large examphalous with multiple organ failure...my second child have small omphalocele but the doctor reduct the omphalocele 3 days after deliver now she's fine and have a better live...i miss miss miscarriage for the third child also have beckwith widermann syndrome with omphalocele...and the fourth one i have deliver 4/7/2016 also same genetic disease with large examphalous..but i never give up when the genetic specialist said my choromose no 11 is problem and my percentage 99-100% to get same baby for the next pregnancy...

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I am so sorry to hear about your situation. It is very unusual for families to have more than one child with BWS. But as you say this is due to a problem with your chromosome 11. I am really glad your second child is doing well and I hope your recent baby gets good treatment and makes good progress. I do hope you and your family are getting good support, both medically and emotionally, to help you cope with everything you are dealing with. I wish you all the very best.

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Hi, there is a Facebook group that can help you. The name is Beckwith Wiedemann and it is a closed group. Please look for the group. Are your babies follow the protocol? AFP every 6 weeks until 4 years old, and abdominal ultrasound every 3 months until 8 years old. Please start the protocol asps. The protocol saves lives!

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So sorry to hear of your situation. The private BWS f/book group is great. Many knowledgeable people and quick responses. All the best and might see you on there (I hardly ever get to log into this group).

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