Lipomyelomeningocele

Three unrelated people this week have asked me questions about Maia's health this week out of the blue. So I thought I would finally give a little encyclopedia background here....mostly though because reading other moms' expereinces with anything spina bifida has been so healing for me. I'll add mine to the blogosphere.

Maia was born with a lipomyelomenigocele, which is a rare (and relatively mild) form of spina bifida. Despite the "mild" part, having a pediatric neurosurgeon sit down, on the most stressful day of your life, after what feels like an eternally long surgery without smiling and then proceed to use the two words "spina bifida" feels like getting punched in the stomach. Really hard.

So that's the medical definition, which anyone can google. The mama definition is we went through some traumatic MRIs and even more traumatic surgeries way too early in our baby girl's life. She ended up having spinal cord fibers tangled up in the fatty tissue in her back. A surgery was able to correct that problem; everything is where it should be now. The mal-shaped form of the tips of her spinal cord fibers makes it really, really likely that they are going to get "stuck" to the inside of her vertebrae as she grows, which means they'll cut the vertebrae open (again) and release it so that she (hopefully) does not sustain neurological damage (which can be caused by the spinal cord getting stretched if it is stuck to something).

For now, she is at the very, very healthy end of the lipomyelomeningocele spectrum. No problems with her bladder, no problems with her movement. When I was telling a friend about the problem this week and recounting to her our experiences in a couple of different hospitals, I literally got sick to my stomach and felt like I was going to throw up. Even though I know she is really healthy now and there's a good chance she won't end up with any major problems in the long run. It's not a fun memory. It gives me huge amounts of empathy, love and respect for all the parents out there who go through way worse than our baby (and having spent some time at a huge children's hospital, it is very real to me that our problem was minor compared to a lot of the kids there).

She can't see her scar yet, but I do think she knows it is there. We've been doing a lot of reading about implicit memory and learning a lot about the way the body reacts to things that has happened to it, even when our minds can't explicity remember it. Every once in a while I get a glimpse of something small and almost imperceivable that causes me to believe somewhere inside her cells, she remembers the whole experience. There are little nuances of her personality that changed - she was different during her first 4 days in the hospital (pre-trauma) than she was after the first medical woes. She was different after the 6 month surgery than she was before. Big things change kids, that's for sure, even when we think they can't remember.