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Moyamoya mom

I have 3 children born with mm  my oldest was misdiagnosed for so long that it wasn't until my 2nd child was born and began having strokes at age 2 months,  multiple tests multiple procedures and acquisitions of shaking baby syndrome  did we find Dr Michael Scott in Boston who confirmed mm 11 mths and many many srokes later . unfortunately it was too late for my oldest daughter to have the surgery,  because of the massive amount of brain damage  so my son had surgery in just the right time he had a massive stroke during surgery and almost didn't make it.apon our arrival back to north Carolina I had made an appointment with my gynecologist to have a tubaligation  because they didn't know if this was hereditary or not but I was already pregnant and had to decide whether or not to keep the pregnancy because of my circumstances with 2 children with sever disabilities,  I choose to go forward with the pregnancy and now have twins, when they were born we flew back to Boston when they were 6 weeks old  only one had mm and the other did not, so her surgery was done immediately before a stroke or any tias,  she doesn't even have the disabilities or complications as her siblings  because she was diagnosed and treated properly. 

Hi!

I'm a Moya Moya mom too! My daughter, Olivia, had her first TIA age 4, bilateral pial synangiosis 1 month later, by Dr Scott!!! She is doing wonderful.

i am so sorry for the suffering you all have been through. 

I hope you and your little ones are coping well. 

 

I was was excited to see someone so close to us (we are on the Outer Banks)....and wanted to reach out. 

 

Sincerely,

neill Meehan 

Posted 6 years ago by Olivia

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