This has been a very hard post to try to write. I wanted to share how the Spina Bifida has affected Littlest so far, and didn’t really even know how to manage that without going off on various rabbit trails. I have all of his different procedures etc. broken up into little boxes in my head, but I thought that would be too “clinical” to blog, but when I tried to make it more “conversational” it just got muddled. So I’m back to writing it as I store it in my brain, as separate little boxes of information. (Actually, I have to confess that my brain has it like an idea map, with Littlest’s little body at the center and all the different boxes around that, with lines as to what they affect physically and other lines to other boxes that show how things interact… it’s very complicated.) Be prepared for rabbit trails, or muddled thoughts (lots of them, lol) or clinical observations that sound more sterile than you would expect from a mom’s blog.

Today Littlest is four months old. It’s amazing how much has happened in just four months, or more specifically 17 weeks, 4 days.  Right now I’m sitting in the Imaging waiting room at Children’s Hospital while he undergoes his second MRI, this one of his head and entire spine. Six weeks ago he had one of just his head, and because of some buildup of cerebrospinal fluid in his neck, Dr. Woodward ordered this MRI to see if there were more pockets along his spine, with the thought that if there are, we may revise his shunt, place one on the other side, or give him a medication which will lesson CSF production.

I just talked to a mom from Bakersfield whose 4 year old daughter is admitted here due to a shunt malfunction. We talked about how we want to get some sort of “ID tag” which we can put on strollers etc. that let other SB moms know that we want to talk about it, those who don’t want to talk about (which is sadly a lot of the families here at the hospital) don’t have to, but we would love to know who wants to talk about it. I’m thinking something orange or green. I have to look at other “badges” from things like Childhood Cancer, etc. and see what colors are already “taken.” Hmmmm.

Spina Bifida: Skin and Spinal Lesions

When Mac was born, his skin lesion measured somewhere around 3cm.x3cm. He had no membrane pocket around it, so it was “full open” and allowing CSF to seep into the surrounding fluid. The NICU team at the hospital where he was delivered measured his lesion and covered it with gauze in preparation for his transport to Children’s’ Hospital. The day after he was born, he underwent surgery to close the myelomeningocele, and Dr. Woodward (his Neuro who we *love*), was able to smooth out his nerves down by his spinal lesion (where they were bulging out from the spinal cord), and close his skin opening, which happened to be higher than his actual spinal lesion. Because his skin lesion was higher than his spinal lesion, there is some funkiness in his function. If he had function just based on where his spine was open and the nerves were pulled out, he would have great chances of walking functionally with braces, etc. Because his skin was open higher than the spinal lesion, there was some damage to those nerves, but we don’t know how much, so he has the potential for never walking therapeutically, much less functionally.

Right now, we are waiting until he’s at the age where he starts trying to walk, to see what function he has. We know that he has very, very little calf muscle on either leg, and some hamstring on his left but a little more on his right. We are preparing that he may never walk, and would need a wheelchair and will be thrilled if he does walk. Better to prepare for the worst case, and be blessed by the best, in my opinion.

Spina Bifida: Hydrocephalus

When he was eight days old, he had a shunt placed in his right ventricles to relieve the pressure that excess fluid was causing on his brain. This VP (Ventricular Peritoneal) shunt is common for babies with hydrocephalus, and SB children have an 80% chance of having hydro at birth or developing it within their first year. Since Littlest’s lesion was fully open, his body had no “closed cycle” of the CSF going from spine to brain to spine and being absorbed, so when his back was closed, it resulted in his body being forced to process the CSF, and it couldn’t keep up, so there was too much fluid left on his brain. The shunt goes in through his right frontal lobe, down to the center of his brain, and siphons off the extra fluid, based on how much pressure there is in his brain. The shunt is programmable, with a pressure-magnet that keeps the valve open to a specific level, and then it self-programs when he lies down and stands up; so that he has a constant amount of fluid on his brain vs. draining off too much when he stands or having too much pressure on his brain when he lies down.

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