Success Stories
The Inside
Scoop: A Parent’s Journey
to Find the Right Medical Care
TRUST YOUR INSTINCTS
By Siobhain Towell
 It was a beautiful spring day on April 19, 2001, when
my daughter, Brenna, was delivered via a planned C-Section.
It was around 1 p.m. that afternoon when I was first
able to hold my baby for any length of time. I held
her for no more than 30 seconds when I noticed that
she had a bony ridge down the back of her head and
that her forehead seemed to protrude a little more
than usual. Her face was beautiful, she had scored
well on her tests and she seemed, by every account,
to be a perfectly healthy baby. So, why did I have
this sinking feeling that something was wrong? I asked
my family over the next several hours to look at her
head – did they see what I saw? What was this
bony ridge? Why was her head more skinny than round?
Could there be something wrong with her? I was particularly
taken aback by her head since my son, who was also
born by c-section, had a beautiful round head – the
classic sign of a C-Section baby since they don’t
have to endure any birth canal molding of the head.
Perhaps if this was my first child, I might not have
been as concerned. But she was my second, and I was
very much concerned. Everyone around me that day, and
many days to follow, assured me that there was no reason
to worry.
I have a vivid memory of that first night
in the hospital when this was gnawing at me to the
point where I got
out of bed (dragging my IV with me) to head down the
hall to the nursery. Surely, if “all babies have
strange head shapes” then I would see several
others babies born that day with strange heads. I did
see the classic and very normal “cone” shaped
heads from a few babies that were born with forceps.
But it was obvious to me that Brenna was different.
I
tossed and turned that night. I couldn’t wait
for the pediatrician to come the next morning. He was
not in my room for three seconds before I mentioned
this concern. I didn’t want to talk about nursing,
umbilical cords, or anything routine like that… I
wanted to talk about head shapes! It was then that
I heard the first of many (from doctors, from friends,
from family, from strangers who I accosted in coffee
shops) “Don’t worry, it’s probably
nothing”. My doctor, who is well respected and
knowledgeable, can’t be blamed for not pointing
this out right away. All of these conditions, although
not rare, are still uncommon and are not something
that most general practitioners see often in their
career. In the majority of cases like Brenna, it is
probably nothing – but you can’t just take
the word of the doctor and let it be… not if
you truly think there is room for concern.
On April
23rd I was released from the hospital and was excited
to be home. Why? Now I had access to the
Internet and I knew this would help me. A simple search
of “abnormal head shapes” on Google delivered
pages of results on a condition called Craniosynostosis.
Wow! This is what Brenna has – sagittal synostosis
also called scaphecephyly – “boat-shaped.” The
pictures of the kids who had this looked just like
Brenna. Tears streaming down my face and shaking, I
brought this news to my family and pediatrician once
more.
Another bad day at the pediatrician’s. “There
is the possibility that it could be Craniosynostosis,
but let’s wait and see. Don’t be so nervous – especially
a second time Mom,” they told me. “I finally
demanded an X-ray or a CT scan or anything that would
definitely prove me wrong.
The May, 2001, X-ray supported
a diagnosis of severe Craniosynostosis. This was one
of those days where
being right was not a great feeling. Multiple hours
on the web and numerous calls to various support organizations
resulted in getting the names of the best craniofacial
surgeons in the country. Finally, in June 2001, we
visited the NYU Institute of Reconstructive Plastic
Surgery and the craniofacial team led by Dr. Joseph
McCarthy. Surgery was performed on October 31, 2001.
Now,
it is three-and-a-half years post op. Brenna is doing
extremely well and is a happy and healthy four
year old. She will endure one more surgery this summer
to close some gaps in her skull – but I am confident
that this will go well.
The moral of this story is quite
simple. You know your child the best – even from
birth. If you think there is the smallest chance that
something is not
right, speak up. Do the research – there is a
ton of research at your fingertips. Tap into support
groups – there are many available that offer
emotional and financial assistance. Be assertive with
your doctors. Demand affirmative tests to prove you
wrong (whether it is blood tests, CT scans, MRIs, etc).
The earlier that you can understand what you are dealing
with, the more options you may have for treating it.
Be strong – it’s ok to get emotional throughout
the journey, but you can’t let the emotions overcome
the reality. It is what it is… and now the goal
is to try to do everything within your power to make
it as best as it can be and help your child to have
the best life possible. Use your knowledge to empower
yourself to be your child’s advocate.
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