BWS Support

BWS Support

BWS Support

A community dedicated to supporting those with Beckwith-Wiedemann Syndrome (BWS), which is an overgrowth disorder.Read more

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  • Great Ormond Street Hospital have produced a new information sheet on BWS. It includes the long awaited information on genetics and...

    By 2 Replies
  • Hi, I am mom of a 2 month baby girl with BWS. She was born at 31 weeks (7 months). After 6 weeks at the NICU, she was released at home on...

    By 4 Replies
  • Hello! I'm hoping to connect with others that have children with BWS. My 3 month old was diagnosed six weeks ago. He has macroglossia...

    By 10 Replies
  • Hi, I'm a newbie here with my first post, I have a 1year and 20month old baby girl born with BWS and HI (Congenital Hyperinsulinism). At the...

    By 5 Replies
  • Hi i have 2 grown men in there late twenties with BWS who have had various health problems in there liftime and to this day my youngest who...

    By 3 Replies
  • If genetic testing comes back negative what are the next steps? Is it possible to have bws and it not show up? Also should doctors still...

    By 10 Replies
  • hi, I'm posting with hope of some answered questions about my daughter. as from the very first scan during pregnancy we were told out baby...

    By 1 Reply
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    Hello, my son is 7 months old and we are currently undergoing genetic testing to find out if he does indeed have BWS. He seems to be a bit...

    By 3 Replies
  • Hi there I have a 2 year old boy who has bws he also had his bowels on the outside he has had 3 operations to repair his bowels also a...

  • Anyone please advise me some heart speacalist and liver cancer speacaliat for bws baby's

    By 2 Replies
  • Hya I am just wonder if you could give me advise on a rally sariouse matter my boy who is 5 month old has bws he also has been diagnosed...

    By 2 Replies
  • Hi My daughter was born on 35th week with large omphalocele. Her weight was 2kg 645grams (5.83 pounds). Blood test was taken and after...

    By 2 Replies
  • Dennis was born with an omphalocele at 35 weeks. His weight was 7pounds and 8 ounces. He also has a large tongue and other issues that has...

    By 4 Replies
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    Hello, hopefully someone will help me here since I have been searching for an answer for some time now. My boy was born 6 months ago. He...

    By 7 Replies
  • I have been approached by the BBC regarding a programme they are making relating to the 9 months of pregnancy. They want to include a short...

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