When I found out that my first great grand daughter needed
emergency brain surgery I was shocked and devastated. She
was only two months old.
The official diagnosis was craniosynostosis which meant the
five bones in her skull were fused together leaving no room
for her brain to grow.
It was imperative that the surgery was done before she was
three months old or the pressure on her brain could cause
life long damage.
Her parents had less than a month to decide to go through
with the surgery, to get a second opinion, to find a
qualified surgeon, investigate costs and to process this
crisis. NOW.
In researching the disorder they discovered that a normal
infants skull cap is made up of five bones held together by
fibrous tissue called sutures. They are not closed but open
allowing space for the brain to grow bigger and develop
normally. This is why an infant has a “soft
spot” on top of the baby’s head.
Her parents discovered that this is a relatively new
diagnosis and that one in two thousand babies are born with
some form of craniosynostosis. Many still go undiagnosed
until it is too late, if ever.
Baby Lexies’ Mom was concerned about the odd shape of
the baby head. It took a second and third pediatrician
before she was properly diagnosed. Fortunately for us, in
time to do something about it.
X-rays were finally ordered followed by a cat scan to
confirm that yes, our precious two-month old infant was
going to have to undergo severe dangerous invasive
head/brain surgery to relieve the growing pressure on the
front part of her little brain.
Her parent’s initial reaction was shock, numbness and
disbelief. But they had little time to dwell on the
problem, they had to be strong and act quickly to deal with
the crisis they were facing. They only had one month. They
were running out of precious time.
The decided that the only reasonable choice to give baby
Lexie a normal life was to go through with the surgery.
After the decision was made a surgeon had to be found.
They did extensive research to find the most qualified
pediatric neurosurgeon. Ultimately they ended up with the
perfect doctor, he specialized in brain tumors both
malignant and benign. The parents were comforted to realize
that the surgery little Lexie needed was what the doctor
did on a regular basis.
They were anxious and didn’t know want to expect
during and after surgery. The post surgery recovery and
four days in the natal intensive care unit were depressing
and difficult, worse than the anticipation before the
surgery. Lexies’ initial recovery was tough on
everyone. She was so helpless, swollen and in so much pain.
Her parents weren’t prepared for the overwhelming
amount of swelling to her entire face and head, even her
little eyes were swollen shut and her eyelids were turned
up. It broke her Mom’ heart seeing her helpless baby
girl in such a state, but she never left her side.
The good news is that three months later she is a happy,
healthy, thriving beautiful baby developing normally.
The bad news is… when she had her two month check up
last week and when her parents believed it was all over and
soon to be forgotten… the surgeon took one look at
baby Lexie and told her parents that she will need more
surgery at a later date, to balance the rest of her head.
He told them that it was too early to tell much more now.
He will know more at her next appointment in three months.
We wish baby Lexie the best of luck and send all of our
love.
----------------------------------------------------
This article was written by Nancy O'Connor Ph.D.. She
worked as a Psychotherapist for 23 years and was the
Director of the Grief and Loss Center in Tucson, Arizona
for 12 years . She is the author of the best selling book
Letting Go With Love: The Grieving Process and How to Grow
Up When You're grown Up: Achieving Balance in Adulthood.
How To Talk To Your Doctor. Her books may be reviewed and
purchased at http://www.lamariposapress.com
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