We took Leah to CHOP yesterday for a CT scan. We expected
the appointment to take several hours but because Leah fell asleep in the
waiting room, they took us right in, put her in the scanner and turned it on,
and she was done in about 20 minutes. The scan confirms the unilateral fusion
on Leah’s right side. It also shows that there are several “dimples” at the
back of Leah’s skull, which are caused by increased intracranial pressure (ICP).
Dr. Taylor said that these mean her brain is trying to grow but the skull isn’t
expanding to allow for that growth. That image makes us thankful that we chose
to have the surgery performed earlier. Because we see Leah every day, we don’t
notice the asymmetry of her face, and so are surprised at how asymmetrical her
facial structure is on the scan. The scan also shows that her soft spot is
pulled far to the left, and is also asymetrical.
While we were waiting to see Dr. Taylor that afternoon, I saw a
baby boy in the waiting room as he was leaving who looked like he had recent
surgery. His head was shaved, and he had a z-shaped scar from ear to ear across
the top of his skull. He also had what looked like a very long tube implanted
in his skull, on the inside of the skin. Before I saw this child, I assumed
that this distraction surgery used springs, so I was surprised to see such a
visible device. When we met with Dr. Taylor, I asked if he could show me a
picture of the distractor. He pulled up a CT scan of a child who had just had
the surgery. The distractor wasn't at all what I had imagined: it was the size
of a pencil and it was screwed into the bone on either side of a cut that was
made in the skull along the suture line. A second screw sticks out of the skin
at the back of the head.
When Leah has the distractor installed, we will attach a kind of
Allen wrench to that screw and turn it two times per day, which will spread the
two parts of the bone 1 mm apart each day. The bones need to be separated by
20-30 mm in all, so we will turn the screw for about three or four weeks, then
will return to have the external screw taken out. The rest of the distractor (the
parts that are screwed to her skull) will stay in for two more months, to give
the new bone that is formed time to harden. A second surgery will be done in
late January to remove the entire device.
Had we seen that baby while we were choosing the type of surgery, we may
not have chosen the distraction osteogenesis because it seems quite drastic,
and frankly terrible. On the other hand, after seeing the CT scan, we may not
have been comfortable with waiting past October 21 to have the surgery.
