So, I would assume most people remember Little Man's journey through diagnosis, treatment, and recovery of his tethered spinal cord. Well, at the time I knew it was related to spina bifidia, but I didn't know how. And of course, if you don't ask, doctors don't tell you a whole lot.
Well, a couple of weeks ago, God introduced me to a complete stranger whose daughter has spina bifidia as well. Sophie has the lipo form of spina bifidia. They, like us, did not know until they started seeing signs that something was just not right with their daughter. Sophie's form of SB is more severe than Little Man's, but still not the worst form. The form of spina bifidia most people think of is the most severe, which is the one where you see the hole in the back. Where as Little Man has the least severe (Spina Bifidia Occulta) of all the forms, Praise God. Anyway, as we talked about the tethered spinal cord and the releasing surgery and all that kind of stuff. She asked who our neurosurgeon was and all those related questions. I also told her that I was confused because they released us, but yet there is the possibility that the cord could re-tether, especially during periods of rapid growth.
So she proceeded to give me information on a SB clinic at UAB where the spina bifidia kids go and they see all their doctors in one day. So I am contacting them to find out what we need to do to get Little Man into that clinic. The main advantage to being in the system is that they see him yearly, so if we ever see signs/symptoms of re-tethering he already has a group of doctors. We don't have to go back through everything we went through previously. So we'll see...
Interesting facts about spina bifidia:
1) It is hereditary. I was told don't worry about it, your other children are fine. So when Little Man gets married and he and his wife are considering children she will need to take additional folic acid supplements months before conceiving. SB occurs within the first 28 days of in utero development.
2) It is more prevalent in people of Irish, Whales, etc decent. We are. The geneticists don't understand the correlation yet, but they know there is on.
3) 87% of all spina bifidia patients have blue eyes. Little Man has blue eyes. Yet again, the geneticists don't know the correlation, but there is one some how. That doesn't mean if you have blue eyes you have SB, it means that 87% of SB positive people have blue eyes. Just want to clarify.