Hello xxx: Hi, my name is Nic and I have a... - BWS Support

BWS Support

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Hello xxx

NoahsMummy1 profile image

Hi, my name is Nic and I have a wonderful 6 yr old diagnosed with BWS immediately after birth and confirmed shortly after. If anyone would like to chat about worries/issues, particularly new mums please drop me line 😊. It can be a scary road full of uncertainites, but support is never far away. Enjoy your babies 😘

5 Replies

Hi,

Deepak here.

My son is also suffering from BWS. He is now 1year 3month old. Bcz of macroglossia he is with gastrectomy and tracheostomy.

Can you please let me know if you have seen this type of case?

Will really appreciate your reply.

BobBaker profile image
BobBakerAdministrator in reply to Ar01yan

Deepak

Sorry to ear about your son's problems because of macroglossia. I am not sure of where you live. If it is in the U.K. we have a national macroglossia service at Great Ormond Street Hospital which is excellent. If you email me at r.baker881@btinternet I can let you know more. It is also good to go on the Great Ormond Street website to find out more about BWS and the tongue reduction surgery. Good luck and hope things improve.

Bob Baker

Ar01yan profile image
Ar01yan in reply to BobBaker

Hello Bob,

Thanks for your helpful message and concern.

I am from India , it is very difficult for me to travel.

Regards

Deepak

Gloria2 profile image
Gloria2 in reply to Ar01yan

Hi, u can search for the Beckwith Wideman support group on Facebook and ask to join.. It's a great group and has many families with the same case worldwide.. And all very friendly and helpful to each other..

BobBaker profile image
BobBakerAdministrator

Many thanks for this and good to hear about your daughter. Just to let you know that there is an important meeting next week in Paris to agree a European wide consensus as to how to diagnose and manage BWS. I shall be attending along with medical professionals and a representative from the Italian support group. We also hope to update our website and to include some BWS family stories which should help parents.

Please also see our Facebook page which can be found at facebook.com/groups/beckwit...

Bob Baker