Wolf-Hirschhorn Syndrome?
 

Ok, I'm not a parent, but my brother and his wife are due to have their baby in late March, and there are severe complications. The doctors have said it's Wolf-Hirschhorn Syndrome.

I know a bit about this disorder, but not too much. It's quite rare, so I'm having a hard time finding any information on it. I was just wondering if anyone here on the TFP has a child with Wolf-Hirschhorn, or if you know anybody who does.

As of right now, this is what I know about the baby, Gabrielle:
--In early December, when we were first informed of the complications, she was 4 weeks behind in growth. Now she's 6 weeks behind.
--She has a clubbed foot.
--She has a damaged kidney.

I would appreciate any information that can be provided. Thanks in advance!

quick google returns this excellent article. quite technical, no good news but???

http://www.emedicine.com/ped/topic2446.htm

"Medical Care: Medical care is supportive. No treatment exists for the underlying disorder.""

Patient Education:


Up-to-date information about the syndrome should be made available to the families through the following organizations:
National Organization for Rare Disorders, Inc. (NORD), PO Box 8923, New Fairfield, CT 06812-8923; phone, 800-999-6673; fax, 203-746-6481; e-mail, orphan@nord-rdb.com.
Chromosome Deletion Outreach, Inc., PO Box 724, Boca Raton, FL 33429-0724; phone, 561-391-5098; e-mail, cdo@worldnet.att.net.

Thanks a lot. The link was very helpful.


Anyone else?