Before I get into the nitty gritty about the CT scan, Colten would like to share a few accomplishments! Today he figured out that when he rolls over, he can roll over another time and get to more toys that his brothers have left strewn about. Funny thing is that he really only rolls onto his right side when going from back to belly so he kept rolling the same way until he could not roll any further! He is also exploring his balance while sitting and doing much better catching himself when he tips. Some of you have asked how his rolling is going so I took a video today. You can clearly see how much he favors rolling the one way and not the other.
YouTube Video: http://youtu.be/HzfRcML3q6s
Now the CT scan. The nurse from Mott’s cranio-facial clinc called us with results on Wednesday: Colten’s sutures (the edges of the skull plates) are NOT fused where they shouldn’t be. He does have some fusing in the typical parts that should be fused, and the parts that should still be open are open. Hearing this information was a mix of excitement and disappointment. I know. Weird. Excitement because craniosynostosis surgery is very scary to think about (any surgery with a child is scary – but removing the skull from the head and reshaping it makes my stomach turn) and we certainly are happy to be avoiding another surgery (for now). Disappointment because of how the nurse proceeded to talk about things. Let’s just say that this nurse and I didn’t hit it off at the very first appointment, when we brought Colten to clinic to have his head shape reviewed. She came in and looked him over and pretty much dismissed our concerns. Looking back on it, there were a lot of questions she maybe should have asked and there was a piece of glaring advice no one gave us. More on that later.
So after she tells me the sutures are open, she informs me that the doctor does agree he has a very unusual head shape for not being a preemie, yet it will probably round out over time and that we should watch his positioning. I asked questions and really, doubted what she was telling me. As Richard explained to me, I hate to be wrong (so true) and the fact that she was telling me my son’s head was going to be “fine” when clearly it is misshapen and I’m not confident repositioning will help at his age, was pitting me against her. We talked about the other option for correction – a helmet, or band, and she reinforced that it’s “just a cosmetic problem” and seemed to reluctantly agree to put in a referral to a helmet specialist.
It bothers me somewhat to think that when a medical professional tells me something, I can’t just always accept it for what it is. However, this has been a struggle since we were first told about Colten’s Spina Bifida Myelomeningocele. At first they said it was “really low – sacral, probably just bladder and bowel issues”. Then he was born and they said, “he cannot move or feel anything in his legs at all – just a little in his right quad; he will never walk”. Colten clearly falls in the middle of those two statements. When I took him to the Mott Children’s ER two weeks after his shunt was placed, when we thought it was malfunctioning, for two to three hours they hemmed and hawed and told me at least twice, “well, we’re probably sending you home, we don’t think it’s a shunt problem”. It was a shunt problem. I’m glad there’s such a thing as “Momma’s gut” (well, I’m glad there’s a figurative one, not so happy about the physical one), but I don’t like that it’s gotten to the point where I second guess so much. And I’m not second-guessing the suture status, I’m more second-guessing our other options. As I said, the nurse seemed to think leaving it alone was good enough.
Here’s why Richard and I are having trouble accepting that as the final answer…
Colten was born full-term, not a preemie. This head shape is more common in preemies and often can self-correct in them if positioning techniques are used. Positioning techniques (laying the child on the right side for one nap, the left for the other, etc…) are most effective prior to six months (I’m not taking the time to cite right now but let’s suffice it to say that I reviewed a number of medical websites yesterday).
Colten avoids his shunt side of his head and has since the shunt was placed. When he lays down to sleep, he instantly rolls to his left side. Always. And falls right asleep. As third-time parents, we know better than to mess with a good sleeper and we never fought him on this. Personally, we felt it would be uncomfortable to sleep on the shunt side. We don’t know because we don’t have one but that was part of why we never forced him to change position. Looking back, we should have tried harder. We used to switch sides with him when laying him down, before his shunt was placed. Then afterwards, we all seemed to just avoid that side of his head and never thought back to “flipping” him. Had any doctor looked at his shape and asked us about sleeping patterns early on, we could have attempted positioning techniques. As I said, not as effective anymore. And, since it’s so ingrained in him to just turn over to his left for sleeping, positioning would be less effective now. We could start him on the right, but he’s able to turn himself any way he wants now.
One of Colten’s other strikes is his motor development. Younger babies may grow out of the odd shape more easily because as they start to roll and move onto their tummy and sit up, they are on their heads less. At an earlier age. Because Colten is just now starting to roll around and sit up, he’s getting farther from the easier shaping age and at a slower pace.
Babies that spend a lot of time laying on their backs are more prone to this misshaping. By the way, the term for this is plagiocephaly (“flat-head”) and there are various additional terms medical professionals put with that term to help describe which area of the head is flat. Colten spent much of the first few months, the critical head shaping time, upright in a carrier without much pressure on this head – compared to a child that spends tons of time laying flat on their back. While that is a good thing, it probably means that his shape started to take root in the womb when he was breech (this is a common contributor of plagiocephaly according to those many sites I was reviewing yesterday). It did not seem to get better after the first few months of life, despite being upright in baby carriers.
Colten’s balancing act – where he arches up his back and balances on the back of his head and his butt, has either been the result of or cause of a very flattened spot at the uppermost back of his head. A lot of kids with “flat head” are flat flat on the back. Colten’s flat spot is up higher and then the base protrudes out. This is not getting better because as he learned how to do this, he does it more and more and more. Even though he has started rolling, that arched back is his most favorable position when laying on the floor playing.
So all of those factors lead us to believe that if his head is going to round out, it needs some help. We are pursing two recommendations: cranial sacral therapy (a very light touch manipulative therapy that helps the body realign and reset) and a molding, or shaping helmet. There is a doctor in Lansing that has worked with other children combining both therapies to get kids out of helmets faster. When wearing a helmet, they are to be worn for 23 hours a day. How long (weeks/months) a child wears a helmet has to do with age and severity. And helmets are ideally started between 4-6 months. They take longer to help if started after 10 months, and are typically not prescribed beyond 18 months. So in our opinion, if we want to get this done, we need to start ASAP (Colten is 8 months). We at least want to have a conversation with another doctor about this option.
In regards to the “it’s just cosmetic” statement the nurse made, that seems to be debated. While it could be “just” cosmetic, a severely misshapen head can cause issues with glasses (uneven ears), bike helmets (we are avid bikers and he will need to wear one!), and in some cases, issues with teeth, eyes and ears. Then there’s the fact that Colten is going up against a lot already. If we can gently help shape his head, it’s one less thing he has to carry in his load throughout life. So we are hoping to set up some appointments in the very near future to see how we can help him.
Last couple of random things… A huge thank you to those incredibly generous souls that joined our “tribe“! We are touched and we look forward to providing Colten with adaptive equipment and toys as he gets older. We will be sure to post more about that when the time comes.
I stumbled upon this website that makes custom dolls for special needs kids. I wanted to post it here so I remember it when Colten gets a little older and we know his bracing needs, but also to share with other families on similar journeys that might be interested! This woman is doing some amazing work that is reaching out to children in such a unique, personal way!