BWS

[ankate]

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 2 months she diagnosed with BWS. She have most the symptoms of BWS (macroglossia; umbilica;l hernia, unexplained hypoglycemia, jaundice; ear creases). For the first 6 months she did not put too much on weight because had some difficulties with sucking (was getting tired very quickly while was eating). From 6 months she started to put on weight very quickly. Now she is 10 months old and her weight is 12.5kg (27.5 pounds). Her appetite is very good, even more than that, she will cry when food has finished. I have to control the amount of food I have to give for her so she will not put on weight so quickly. In regards of development she is doing most of the thing babies have to do at this age. the only thing is that she is not yet crawling. she is trying, however could not lay on her tummy for very long time, because of hernia. During this year is planned tongue reduction surgery and very possible hernia repair too.

I have a few questions:

1. Do I have to expect that my baby will always want to eat so much?

2. From 6 months old my daughter start teething and from that time have really bad night colic (will wake up almost every 1-2 hrs crying). Is it common for babies with BWS?

3. What are the chances that in the far future my daughter's children will have BWS too?

Thank you.

Kind regards,

Anna.

[SophieMom]

Hi. My 22 month old has BWS. I also worried about her food intake and weight but she can now stop when she's had enough. Not sure if you meet with a genetic team. We do and they were able to explain the different ways BWS genetically develop and it's my understanding it's not past on. She had tongue reduction surgery at 8 month and is a normally developing child. She is 40 pounds and has large abdominal area which again is common. She sleeps great and through the night but if you are concerned about her sleep you should hAve her sleep monitored. We did at 3 months to make sure she wasn't having sleep apnea. good luck with surgery we are so glad we went through it.

[ankate]

Hi

Thank you very much for your comment.

Yes, we have met genetics and she informed us that my daughter is no at risk to have Wilm tumor (she do not have this in her genetic test result).

Mainly my daughter wake up during the night because of gases in the intestine, plus i have noticed that when she teething she have stronger night colic.Team from GOSH referred us to gastroenterology team.

When surgery will be done, will keep you updated about outcome! Fingers cross, hopefully we will not wait very long for the operation.