My baby may have a life threatening disease :(
My 9 week old was born with birthmarks covering half of her face, and several different areas of her body. Her pediatrician wanted us to see a geneticist about it. We went today, and they think she has something called it may be something called CM-AVM Syndrome. It can cause seizures, mental retardation, abnormal bleeding, heart failure and can be life threatening . They tested her for the RASA1 gene to hopefully rule this out. The results will take 6-12 weeks to come back. Please keep us in your thoughts. I am a nervous wreck. :(
UPDATE:
I feel like a huge weight has been lifted off of me because at Kimber's specialist appointment today, he didn't seem to think that any of the capillary malformations were attached to her brain, but referred us to a pediatric ophthalmologist to check to make sure they aren't going to harm her vision. He also suggested we have laser therapy done on her face, to minimize the appearance of them. He said that some children have to have as many as 30 treatments by the time they are 6. Please continue to keep us in your thoughts. They still haven't gotten the results of her genetic testing, but this is a step in the right direction :)
Oh my goodness!!! I am so sorry!!!! I cannot imagine how scared you must be!!! I am definately praying for you ALL!!!! Please update when you get the results!! {{HUGS!!}}
She's a cutie. I hope that everything works out.
A prayer has been sent.
If you had to go 90 days without
- Tatumsmommy0123
on Apr. 27, 2012 at 5:18 PM