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From the moment she was born, my husband
and I noticed that she was-- her face wasn't fully symmetrical.
And when she would sleep, one eye
would always stay a little bit open.
They kept asking me, well, what could we do for you?
And I just said, you know, I really
need the names of people who specialize in this
and do this all the time.
For Leia, she had a problem with her coronal suture on one side,
and that led to an asymmetry in her face, specifically
around her eye and her forehead and then a problem
where the brain could not grow forward on one side.
Oh, there's certainly a lot of nuance
in how to put the head back together so that there's
enough room for the brain and that there's
none of that asymmetry left.
So, we were able to meet Dr. Frim and Dr.
Reid simultaneously.
They were just very accommodating,
and it was just very coordinated care.
Well, with craniosynostosis, a child
can have developmental issues, vision issues, some appearance
issues, neurologic issues, airway issues.
And then, therefore, there's a need for different specialists
to intersect and provide holistic, comprehensive care.
So, on the majority of cases, Dr. Frim and I
come together in the operating room.
I usually expose the structures for him.
And then he works with his associates
to safely remove these structures or bones,
keeping the brain safe.
And then I will reshape the bone and put them back together,
so give the brain some space for future growth.
Any time you can group together a bunch of people
who are aiming for the same goal and have
different views, different expertise,
and can combine that, is going to provide
for a better outcome.
My role on the team as the audiologist
is to monitor hearing and balance
concerns for our patients and their families.
We can come up with one treatment plan for patients.
It's really powerful to have an answer,
to have an explanation for why your child has craniosynostosis
or a cleft.
The role of genetics in the CAMP program
is to sort of provide support for thinking about
whether there could be a genetic cause for clefts
and other craniofacial differences.
In Leia's case, again, you know, it involved complex surgery,
keeping the brain safe, keeping the eyes safe.
She looked perfect.
I remember the first time I saw her
after coming out of surgery, my mom and I just looked at her,
and we were like, she looks so symmetrical.
I mean, she looked--
I mean, she always looked perfect.
But you could tell, I mean, right initially
off the surgery how wonderful she looked.
And at our last appointment, Dr. Reid
mentioned that unless any concerns develop
over the next several years, he was very happy with how
Leia had come along.
And he didn't see the need to see her again,
that he thought she was doing as perfect as could be,
here with the dream team.
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