Finishing Craniosynostosis Treatment

Gage is out of the DOC Band helmet now, which is quite a relief... which is not to say that he was particularly happy. He was so used to being able to hit his head on things that he cried every time he bumped his head for the first several days. He was just so used to being able to bump his head and not feel anything. He's used to not having the helmet now, however.

The change in his appearance is quite dramatic. I can still feel lumps on his head from the movement of his skull's plates - although they do fade a little with time. The surgical scars are all but invisible. All in all, he went through two DOC Band helmets, spending about 5-6 weeks in each before outgrowing it. Gage only needed the twice weekly appointments during the time that he had the first helmet. Once they put him into the second, they determined that his growth had slowed enough that we could go to weekly appointments. Phew!

However, for those of you looking at having to go through this, yes we did have to pay half of the costs of EACH helmet. That totaled $3000, a rather painful amount to deal with. Fortunately, the office was quite good about setting up a payment plan, and we had the option of paying only $500/month rather than the entire amount up front.

Before Craniosynostosis Surgery

before craniosynostosis surgery - side view

before craniosynostosis surgery - top view

After Completion of Helmet Therapy

after helmet therapy

after therapy - top view

It's a lot harder to get him to stay still for pictures now! But it's still easy to see how much rounder his head is now.

The appointment where they took the helmet off was interesting. A casting was made of his head one last time. He took it pretty well, and this time we got pictures! The therapist's office also let us keep both the helmets and the molds made from previous castings.

One interesting thing we noticed about Gage's development in terms of activity and abilities is that when he had the helmet on, he tended to run behind. He caught up briefly between the first and second helmets, fell a little behind again (although keeping the skills he had gained), then got ahead again when the second helmet came off.

This is just a guess, nothing definite, but we think it probably relates to the weight of the helmet. The helmets are quite lightweight, but we are talking about the strength of a baby, here, and a change in his center of balance.

With the helmet on, he had trouble learning to lift his head or roll over. With it off, he accomplished those milestones in a matter of days. Same for sitting and crawling. Now, at nine months of age, he's had the helmet off for close to three months, and he's almost walking. He's been pulling up on things since about seven months. He seems to have an excellent sense of balance. Now, it's possible that he would have gone this fast anyhow, but we really think having to lift that helmet helped build his neck muscles, and possibly others as well.

I'm also delighted to note no problems in other areas of his development. He's babbling quite nicely, with a charming number of "ma-ma's" thrown in. He eats, as I put it, like a baby bird, which is to say that mouth is always open for more, more, more! He's an absolute sweetheart and getting good at giving hugs. He'll crawl just as fast as he can to someone, pull up on their legs and give a big hug - very sweet!

As you can imagine, after worrying so about him, it's great to see Gage be a normal child, with no signs of any of the problems that had a slight chance of coming about. I really feel good about all the things we went through with him. Soon we'll only have to have annual followups with the therapists and surgeons annually until he's five years of age; they have to be sure his skull continues to grow correctly. Odds are he won't need any more treatment, but a few children do end up needing another surgery. I feel confident that this won't be the case.


More About Scaphocephaly/Craniosynostosis

Head Casting Pictures
Watching my son get his head cast was so hard yet so fascinating! You never know if your child will be calm about the process or not.

The DOC Band® Helmet
This is what does the shaping of your baby's head after the surgery. Believe it or not, my son missed it once it was gone.

Craniosynostosis Surgery
This is where things got serious. There are few things in life as difficult as watching your infant go in for surgery.

Copyright © 2003-2018 Stephanie Foster unless otherwise indicated


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