Because Jonathan had a number of fractures during the first few months of his life, he spent a great deal of time flat
on his back. As a result the back of his head became quite flat. This is somewhat common in babies and children with OI, since
their skull bones are softer than normal, and they spend more time on the backs of their heads (often lying down recovering
from fractures). His head was wider than it was long and when we looked straight down at the top of his head it had almost
a triangular shape. Narrow in the front and wide in the back.
I did not know if there was anything that could be done
to help this, but I began researching it on the internet. I found the website: cranialtech.com to be a great resource. They
make helmets that babies wear for a number of months to redirect the growth of the head. The helmet basically holds the head
where it shouldn't grow anymore, and allows room where it needs to grow (ie. in the back). I even called a few of their offices
and found that they had treated a child with OI before.
None of Jonathan's doctors or therapists had ever heard of
a child with OI wearing a helmet to help correct the shape of his head. But they felt that he might be a good candidate and
referred me to Dr. Morales, a craniofacial specialist, in Salt Lake City (where we live). While he didn't have any experience
with OI, he felt that Jonathan would be able to tolerate the helmet and that we would just be extra cautious and careful,
perhaps adding a soft lining to the inside of the helmet.
Dr. Morales referred us to a company called Fitwell to make
the helmet. They make prosthetics and orthotics and would be able to treat Jonathan locally. The technician who we have been
working with had experience fitting adults with OI with braces, so I felt comfortable with him--he understood how careful
we had to be. Our Dr. did order a different helmet than the standard helmet, a little more expensive, but
a gentler one he thought. It could be molded with heat to change the shape.
Jonathan's helmet was made by making a cast mold of his head. He didn't especially like that part, but it wasn't
bad at all. The helmet is clear plastic and very lightweight. It has an opening on the side with a velcro closure. It
applies light pressure where his head does not need to grow anymore (on the sides and his forehead) then it is bubbled out
a little in the back to allow his head to grow. (So when he was lying flat on his back--the back of his head wasn't touching
We see Dr. Morales once a month and the technician at Fitwell every 3 weeks, or as often as we need to.
We were told Jonathan would need to wear the helmet 3-4 months. He wears it 22 hours a day--we basically just take
it off for bathing and changing his clothes. When it's hot we take it off every so often to let it air out. He does sweat
a little wearing it.
Jonathan has been wearing his helmet for 4 months so far (12-06-00) and we have seen a tremendous
improvement in that time. His head now has a definite roundness in the back, where before it was completely flat. We have
been thrilled with the results so far and are excited to see the end result.
Jonathan has tolerated wearing his helmet
extremely well. He does not care if it is on or off. We were told that most babies do not mind wearing the helmets, but we
were concerned about what affect the OI might have. But so far there have been no problems.
I know that every child
with OI may not be able to tolerate a helmet. I think you have to look at each case individually and evaluate each child's
condition. It has worked for Jonathan and we are happy that he has been able to wear it.
UPDATE: Jonathan wore his
helmet from the beginning of August through the end of December 2000. He never had any problems tolerating the helmet and
we are very happy with the results! It has been a little over 3 months since Jonathan stopped wearing the helmet and the back
of his head has maintained its roundness. I was a little concerned because he was on the back of his head quite a bit after
a femur fracture in Feb. 2001, but it didn't seem to affect the shape at all.
PLEASE JOIN US -- If you are the parent of a child with OI, we have started an OI Parents Email Discussion
List. We have over 650 members who share information on a daily basis with each other. If you would like to join,
email us at firstname.lastname@example.org and let us know.