Beckwith Weidemann Syndrome

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I posted a few weeks ago that my DS has one arm larger than the other.

Our paediatrician (we are in the US) referred us to a geneticist and he has been diagnosed with presumed Beckwith Wiedemann Syndrome.

We are awaiting the results of a gene profile and he has had an abdominal ultrasound to rule out Wilm's Tumour, hepatoblastoma, or large abdominal organs. Thankfully the ultrasound was normal.

My DS is 9 weeks old , has a large left arm and a small umbilical hernia. They did not find any other features of the syndrome when they examined him.

Does anyone have any experience of this syndrome? Would love to hear from anyone.

Thanks

Here is a link to the UK charity for this condition.

And I assume you have seen the U.S. version.

You may find some help there.

Thanks DB, will have a look.

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