The words that keep replaying over and over in my head from earlier today are “he should have been fitted MONTHS ago”. It’s like that song that is stuck in your head and you sing it all day over and over, the same lines, never really singing the whole thing. There are enough things with Spina Bifida Myelomeningocele that a mom can blame herself for. Now there’s this other whole unrelated medical issue that I can blame myself for not following through on earlier… Colten’s head shape. Although not for lack of trying – we attempted to address the head issue at Colten’s Myelo Clinic appointment around 5 months of age. The PM&R team said “we’ll check with our helmet guy.” We never heard back. Then we pushed our way into the Mott Craniofacial Department and insisted they look at his head. They ordered a CT. No fused bones, they said. Go home, make sure your 6-month old doesn’t lay on his left side (ha!) or arch his back and roll onto the top of his head (sure!). And if you really really really think you need a helmet referral, the nurse half-heartedly agreed to give one. WHICH I SHOULD HAVE TAKEN AND RAN WITH! But I didn’t. I said we would try to wait it out, as the professionals recommended. They know best, right? Maybe we were making a mountain out of a molehill I thought. No, in fact, we were making a football out of head. Colten was already beyond minimal misshaping at that point and should have been fitted back at 5-6 months of age.
Some days, it is very hard to figure out which medical professional to listen to. This experience reinforces the entire concept of “go with your gut” – I should have. If you’re reading this, YOU SHOULD TOO! Colten would have been in a helmet MONTHS ago had I just went with my gut and went to the orthotist back then. But we trusted the medical professionals. We trusted it might work itself out as he became increasingly mobile. So now we really struggle with what information to take in and what information to toss around or toss aside. Another example is the length of time Colten will be in the helmet. When we were at the last Myelo Clinic, the orthotist said Colten would be in the helmet “for a very long time.” When we asked, “What’s a really long time?” he replied, “18 months.” Looking back, it is now unclear – did he mean in the helmet for 18 months, or until 18 months of age? Based on the discussion with Mark today at the University of Michigan Orthotics & Prosthetics Clinic, until 18 months of age sounds more likely. Mark actually said that the bones are fused enough by about one (1) year of age that not much progress will be made past that. We found this interesting, since many others have said two (2) years of age. So Richard and I decided we would put NO expectations on time frame. We would sit back and see how adjustments were made, how much progress Colten was making, and when progress comes to a standstill, then the helmet comes off. We do have to remember that while most babies have a fontanelle that is closed by about a year of age, some stay open until almost two years of age. The fact that Colten’s anterior fontanelle is larger due to the expansion from his hydrocephalus at birth, could mean it will take longer for his to close up – meaning we might have more time than Mark is predicting to help reshape the head.
Either way, Colten was measured today for his helmet and will get it in about two weeks. Years ago, and maybe even still these days in some medical facilities, plaster molds were taken to get the current head shape. Now, more and more offices are using reflective technology and computer programming that allows for a laser-reading of the head shape and a computer generated mockup. From that data, a helmet is constructed that has foam (?) padding inside it. The padding is less in areas that the head needs to expand into, and is fuller in areas where pressure is needed to prevent further protruding growth. The helmet is in two pieces and connected by sliding screws and hook and loop (Velcro) straps. This allows the helmet to start small and expand a bit as the child grows. Colten will be measured every six (6) weeks down in Ann Arbor and the helmet will get re-adjusted as necessary by the orthotist.
To do the measurements, Mark put a stocking over the top of Colten’s head and his ears. Funny looking, but still a darn cute kid:
We put tiny reflective dots all over the stocking and a few on his facial points. The location doesn’t need to be exact, the computer program measures the dots and fills in the distances between them. In this picture, you can get an idea of what Colten’s head shape is and how long it is, how narrow it becomes in the back (should be wider in the back), and how uneven the sides are (one is rounding out, one is remaining flat).
This is what a typical skull should look like:
Some people have asked if helmets are simply for cosmetic reasons. Sometimes, yes. Sometimes, no. There is a whole group of babies out there that actually do have their bones fuse. Sometimes, after surgery, they are also placed in a helmet to help finish the shaping of the skull. Sometimes, babies have severe torticollis, which is a tightening of a muscle in the neck I believe, that causes the child to always look one way or the other. This results in an imbalanced growth and development of the head and a helmet can help even it out. When a skull begins to get overly-misshapened, internal structures can be in jeopardy – jaw alignment, ear canal and alignment, eye sockets and alignment, etc… It is our current understanding, though, that brain development is not often impacted by skull shape – that the brain will grow into its “house” (except of course, if the shape of the skull caused an increase in inter-cranial pressure). However, for many kids in helmets, the shape is severe and if left untreated would cause obvious physical deformities. Is a physical deformity a bad thing? No – it is what it is. We do have a chance to correct it though, at a time when the child will not be bothered by the apparatus, and in a non-invasive, fairly gentle way. The helmet does not squeeze the head, it simply impedes the unwanted direction of growth and encourages the proper growth pattern. In Colten’s case, his helmet will have more open space on his left side and in the back sides of the helmet (I’m guessing), since those areas are where his head should be growing into and are not. The helmet will allow for less growth space in the front and directly in the back so that the football shape can be rounded out.
So, now we just wait. We have an appointment scheduled in about 2.5 weeks and we are trying to get that moved up to the two week mark, as recommended for fittings. We managed to get today’s appointment moved from its original date of August 27 to August 2, just by calling the clinic multiple times a day to check for cancellations. The receptionists were wonderful and kept moving our appointment up as openings were available until we really couldn’t get any closer! So we’ll keep trying to get in a little sooner to the final fitting. It kind of felt like hitting a weird lotto win each time I called and they could move us closer! I highly recommend this to any parent trying to see a specialist. Even if they put you on their cancellation list, it is easier for them to just fill an appointment with someone on the line than go through the list and see who can take the appointment, requiring them to make call after call.
In the meantime, apparently the “fun” of all this is that we can decorate it with stickers or something. I think we should take a black marker and draw skull lines on it. That would be amusing!
And lastly, Mark also checked Colten’s feet briefly and is sending the code for Kangaroo AFO’s to the insurance company. Once the approval for that gets passed through he can move forward with fitting him. That’s another story and dilemma for another day…
Lesson for the day: GO WITH YOUR GUT!
And not to leave big brothers out, they had a morning of fun at the park with Momma (Daddy took Colten to his treadmill session), followed by some special time with their Papa at the Ann Arbor Hands On Museum.