At Colten’s follow-up cranial ultrasound today, Dr. Maher was pleased at the functioning of the shunt and the levels of fluid in Colten’s ventricles. So we got a thumbs up and as long as all continues to progress this way, we will not need to see neurology for another six months. YAY! That seems insanely crazy considering we’ve had 5 appointments with neurology over the past 3 months, not including the daily appointments with them while Colten was in the NICU and then while he was in the hospital for his shunt and revision. So to not see them for six months is going to be a bit odd. Even during our mini-breaks from medical appointments (most of December!), we get kind of lost in the day to day of life (a good thing!) and forget that there is a whole future of challenges ahead. This is nice because it lets us just enjoy what we have right now and not have to think of the things that have not hit us yet (some days; other days, honestly, I obsess wondering when X, Y or Z is going to happen). So hooray for not seeing neurology for six months!

Since there wasn’t much to discuss at the appointment with Dr. Maher, I attempted to get clarification on how exactly a child with myelomeningocele develops his/her nervous system compared to a child without myelo. In my elementary knowledge of the spine and nerves, I see a great big thick cord going down the back with smaller off-shoots coming out of it, and even smaller ones out of those, and on and on until you get to the microscopic nerves that help us move our fingers, feel a rough surface, react when a stove is hot, etc., like the root system of a tree. So from what I understood about myelomeningocele, I was picturing the spinal cord looking quite the same, except that the ends of the “roots” just didn’t grow all the way and didn’t get down to Colten’s feet. They fell short or went elsewhere or got lost in the cyst on his back or just did not form at all.

According to Dr. Maher, and I won’t quote him exactly because frankly my memory isn’t that good and I don’t want to credit him with something that maybe I didn’t understand or maybe misinterpreted, but here’s the gist of what I got from his description:

The nerves don’t all grow out from the spine like roots of a tree. Yes, the spine does have many nerves that grow out from it, but they connect with nerves coming in from various body parts. In utero, the feet grow “foot nerves” and in normal development, these foot nerves find and connect to the nerves coming out from the spine, making synaptic connections. When you have this type of defect, the nerves are present all over the body, but they aren’t all making connections to each other. Coming out of the very base of the spinal cord are the nerves that control bladder and bowel function, and in myelo, these nerves are almost entirely missing or defective. As you move up the spine, the nerves are all very different from myelo kid to myelo kid. So yes, he has nerves in his feet most likely, but they are not making connections to the nerves that came from the spine – either because the nerve from the spine simply didn’t develop, or is damaged. There is also a poisoning of the nerves due to the exposure to amniotic fluid. So even when a nerve is physically there, it could be damaged that way.

Dr. Maher went on to explain that these kids have gaps in their nervous system. In utero, if the nerve formed but didn’t make it to where it needed to go, it wasn’t being communicated with. The foot wasn’t getting any signals from the spine/brain so it wasn’t moving and it wasn’t providing any neurological feedback back to the spine either. After a while, that nerve just became unresponsive. It’s dead. That’s why we see less muscle development in the lower legs with these children. The nerves were not being communicated with so they didn’t help move the leg and build muscle.

Relaying this information to Richard, he became quite excited because the fact that there should actually be nerves in Colten’s lower extremities is a big plus on our side and makes the Anat Baniel Method even more appealing. ABM works on making connections between the body and the brain. But it certainly needs nerves present to do this. The connection needs to be from the body part to the nerve to the spine to the brain. However, my hesitation still exists because we don’t know how big that gap is between the foot nerve and the “buddy nerve” coming from the spine. And we don’t know how big of a gap can be overcome. And we don’t know if the buddy nerve is even functional or present. So there are still a lot of big IFs out there. But it certainly seems more viable as an option to create better connections for Colten to one day use his lower legs and feet more effectively. We’ll take that!