Children's Liver Disease Foundation
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Bilirubin levels and Noonan Syndrome

Hi everyone.. I'm sitting here over thinking and worried... My son now 6 weeks old had already been through much blood work and now a liver biopsy.. His bilirubin levels have been out the roof since birth and raising going from 63 to 68 and last blood test Feb 2nd sitting at 74. I saw another specialist that looked over his heart echos and now is talking about a syndrome called Noonan syndrome.. has anyone dealt with bilirubin levels like mine or heard of this syndrome???

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Hi,

I don’t know anything about Noonans syndrome, but my son, who is 10 weeks now, has a liver condition called Biliary Atresia. This causes his bilirubin to be very high, last week it was 126. We are seeing the consultant again today so hoping it will have come down.

Has your wee one been tested for Biliary Atresia?

It’s all such a worry and stress. If you’ve not already, I would suggest you join a couple of Facebook pages called Liver Mums, and another one called UK Liver Parents & families. There’s such good support on these pages from other parents who have been through, or are going through it all too. There’s bound to be someone who knows about Noonans syndrome.

Xx

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Hello, I am sorry but I know very little about Noonan syndrome but there is a support group at: noonansyndrome.org.uk/

I hope you find some answers to your questions there.

Best wishes - Jacquie

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Hi

We have a family friend with Noonans. She is an adult now and lives independently with carer support. I know she did have heart issues as a child but she is one of the happiest people we know.

I would definitely look at the Noonans syndrome org that Jackie recommended.

I hope you get some answers soon to what is going on health wise with your little one.

Take care

Hope and hugs

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Hi, don't know if this is still relevant to you, but I have Noonans syndrome and would be happy to email you if this helps. Jackie

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