BWS

[Nina-Dennis]

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 to do with BWS.

[Songbird63 Administrator BWS Support]

I hope Dennis is doing well now? Has he had surgery?

If you have any specific queries we can help you with then please ask.

You might like to look at our website for more info bws-support.org.uk

Diagnosis of BWS now is usually by a genetic test that your paediatrician can arrange.

If Dennis does have BWS and you live in the UK Dennis may need a referral to GOSH for evaluation of his large tongue.

Wishing you all the best.

[Nina-Dennis in reply to Songbird63]

Thank you Songbird63!!! I live in USA. Dennis is only 3 months old write now. He hasn't had any surgeries yet but will have one for his omphalocele. His tongue is not that big that he need a surgery. He hasnt have a genetical testing yet but he will have one soon. We are preety sure that he has it thou. He also has a lump or a mass in his kidney, so far its not growing.

[Songbird63 Administrator BWS Support in reply to Nina-Dennis]

Sounds like you have a lot to deal with. I assume the mass in his kidney has been assessed? As you may know some BWS kids have an increased risk of Wilms tumour in early childhood so it must be checked out fully.

There is a US BWS support group who may be able to help you too.

I hope the surgery goes well. And enjoy your wonderful son. Contact us any time you need to.

[Nina-Dennis in reply to Songbird63]

yes the kidney has been assessed. He will be having ultrasound and blood work every tree months. He is at high risk for tumors.