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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 :)

by on Apr. 27, 2012 at 5:18 PM
Replies (31-40):
CABZS
by Ruby Member on Apr. 27, 2012 at 7:50 PM

I hope & pray everything will be fine!!!

Mom_The_Nurse
by on Apr. 27, 2012 at 8:08 PM

im praying that it's  not what it is!

othermom
by Ruby Member on Apr. 27, 2012 at 8:12 PM

I hope everything turns out okay. That would be very scary to deal with

HTLoveMyBoys
by on Apr. 27, 2012 at 8:16 PM

She's beautiful! I hope it comes back ok!

Loving Wife to Matt since 06/17/95.
Dedicated Mom to Shane Wyatt (05/29/96),
Brendan Cole (02/13/99), Liam Everett (04/06/01), Hayden Levi (01/10/03) & Riley Chase (12/28/07)

LovingSAHMommy
by on Apr. 27, 2012 at 8:21 PM

Awww. Having to wait that long must be excruciating. She's absolutely adorable, and I wish you the best! Keep us updated!

kcangel63
by Ruby Member on Apr. 27, 2012 at 8:23 PM
She is beautiful! What eyes!

Praying everything comes out fine. My cousin was born with a huge birthmark across part of his face, neck, and shoulder. He's healthy. Hopefully, like him, her's us nothing more than a mark.
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armyvet06
by Silver Member on Apr. 27, 2012 at 8:26 PM
She is as cute as can be. I will make sure to pray for her and you. Hopefully the test is negative.
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Tatumsmommy0123
by on Apr. 27, 2012 at 8:50 PM
thank you ladies
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DanaG70
by Platinum Member on Apr. 27, 2012 at 8:52 PM

 What a cute little gal!

You and your daughter will be in my thoughts.

starreyedcutie
by Platinum Member on Apr. 27, 2012 at 8:53 PM
Absolutly beautiful! I'm praying for you and ur precious baby !!!
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