Wolf-Hirschhorn Syndrome? - Tilted Forum Project Discussion Community

rhaevyn · 01-31-2005, 05:58 PM

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!

runtuff · 01-31-2005, 06:13 PM

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.

rhaevyn · 02-05-2005, 10:06 PM

Thanks a lot. The link was very helpful.

Anyone else?

01-31-2005, 05:58 PM	#1 (permalink)
rhaevyn Insane Location: Pittsburgh, PA	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! __________________ ~Alex~ You've come far, and though you're far from the end, you don't mind where you are, 'cause you know where you've been.

02-05-2005, 10:06 PM	#3 (permalink)
rhaevyn Insane Location: Pittsburgh, PA	Thanks a lot. The link was very helpful. Anyone else? __________________ ~Alex~ You've come far, and though you're far from the end, you don't mind where you are, 'cause you know where you've been.

01-31-2005, 06:13 PM	#2 (permalink)
runtuff Crazy	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.