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AVM Survivors Network

Congenital/infantile facial AVM?


#1

My daughter McKenzie was born with a big lesion on her lip, nose, mouth and cheek in Jan 2015. She is only 7 week old now. I want to see anyone in this group or your baby was diagnosed with AVM at infancy. Can you please share your learning?


#2

I'm glad you found this group. Welcome. There is a lot of good information about AVMs on this site. I'm an adult with AVM but I'm sure someone in this group with a baby diagnosed with an AVM will respond and share their experiences. McKenzie is lucky to have a loving Mom like you.


#3

Hi My daughter Sofia was also born with a facial AVM on her right side of her face eyes nose ear and throw. We want to Boston Children Hospital were they were performing embolization to stop the bleeding that she was having. Afther doing all the embolization need it for her at children there was no more improvement that they could provide so they told has about this new laser that they were using in Germany. I was ready to go but my husband wanted to see if we could fine something in the usa, and he found doctor Winer in New York. So we pack and leave for New York to meet with hem. The only problem with hem was he didn’t except any insurance cash only and as all of you know AVM is not a one time fix. so sadly I had to leave because I new that I couldint afford hem. But we never stop looking and we found Arkansas Children Hospital. There we go and we meet with doctor Richter an amazing man that help us so much, help my baby Sofia.


#4

Maria,thank you for your reply. It is good to know there is someone I can talk to at this most difficult time of my life. We are still at the early stage to get complete diagnosis. So the doctors havent told us when she can get treatment. Can u get treatment before it bleeds? How old was Sofia when she had her first bleeds? How old was she when she had her first embolization? Is there a minimum age for treatment? Do you think ACH is better than Boston Children’s Hospital?
I saw your posting of sophias photos. She had great progress. I hope one day mckenzie makes such progress too. Thank you!


#5

Thank you! I am glad that I found this community.