New to BWS

[amandamiadan]

Hi im new here. My baby girl is 3 months old. When I had my 12 week pregnancy scan we were told she had Examphalous. She was born 20 november by emergency c-section due to other complications. She had a very succesful operation at 3 days old. While we were in hospital we were told she could have BWS as she had earpits in both ears & a slightly enlarged tounge. We got the results last month which confirmed she did have BWS. We seen the genetic doctor a few weeks ago who expllained to us that she has mild BWS & will need to be screened until 2 years old. Everyone i talk to about this have never heard of it, (neither had I) not even my doctor or healthvisitor had heard of it. I live i the UK, Carlisle Cumbria.

[BobBaker Administrator BWS Support]

Congratulations on the birth of your daughter. BWS is generally an optimistic syndrome. Our son is now 33 and has three lovely children of his own. If you give me a call on 01258 817573 I can put you in touch with other families. You will also find the information sheet on BWS on the Great Ormond Street website useful. If your daughter needs the ultrasound scans they are usually performed every three months until the age of six or seven.

Best wishes

Bob Baker

BWS Support Group UK

[Ar01yan]

Hi Carlisle,

I think my message with give you some moral support.

You are not alone going through this stage. My kid was 14th Nov 2015 with omphalocele minor. He went through an surgery when he was days old.

After that we also came to know that he has BWS and slightly large tongue.

Doctor gave us two option. We should go for tongue surgery or wait and watch till child grow (aleast 1 year old).

We choose the second option wait and watch.

He is having breathing problem also. Right , now again we admitted him in hospital (PICU).

Almost from last 3 month we are going to hospital very often.

If you want to share some information with me then directly you can mail me at [e-mail].

I am Deepak from India.

[daniellemcgettrick]

Hi, I was born with BWS (1982), I have a twin sister who was also born with it. We find no one ever knows much about it. The only doctors recently that have any knowledge is anesthetists because they have to learn about int-abating people with enlarged tongues due to BWS.

I have 1 kidney, an enlarged tongue, and had all enlarged organs in my body. I am not noticeable in any other way. My parents decided to a life changing decision about my tongue and I had 3 operations on it as a baby. I now live with a short tongue, but to be honest I've lived a perfectly normal life, my teeth are slightly out of wack on the bottom, but no one ever knows I had a large tongue now, and other than that I look and feel no different to anyone else!!

If you ever need to ask questions or ask me about it is, I have no qualms about you emailing me!! [e-mail].

Congratulations on the little bub, I hope you are loving every minute.

Danielle McGettrick

[amandamiadan]

Thankyou for your reply. It was nice to read your story & hear that you are doing well. My little girls is nearly 4 months old & she is doing very well. We are just waiting to here about when her 3 monthly blood tests will start. Yes i am loving every minute with my little darling.