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Date: | Tue, 11 Mar 2008 12:13:12 -0400 |
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My daughter, 3 1/2 has fairly mild Goldenhar's Syndrome, and my son, 21
months has a very mild case of suspected Goldenhar's. THere is not a lot
knows about the cause or genetic link. Here is a website with information:
http://www.goldenharsyndrome.org/
Goldenhars effects the eyes, ears and vertebrae (occulo-auriculo-vertebral
spectrum) along with other systems.
There can be severe facial assymetry which I would guess could cause
breastfeeding problems. Fusion of cervical vertebrae is also very common and
can cause limited range of motion which can also cause issues. My daughter
refused the breast and I ended up pumping for her - turns out it was probably
due to the fusion of her vertebrae in her neck. There can definitely be issues
with the kidneys and heart.
The parents will probably be seeing a geneticist, cardiologist, urologist,
opthalmologist. The baby will probably need to have a kidney ultrasound,
ECHO, and any testing related to deformities.
If you have any other questions, please feel free to email me.
Amy Grant
LLL Leader
LLL of Central Lake County, Illinois
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