I remember when I got the phone call from Dr. Stanford
telling me Skylar’s diagnosis. My parents were in my hospital room. I had never
heard of Schizencephaly. I was a single mom and now I have a child with a rare
birth defect that is the worst case they’ve ever seen. It was assumed that
Skylar had Hydrocephalus and we had talked with a Neurosurgeon while I was
pregnant and we discussed a shunt and everything else. I was preparing for her
to have surgery and then once they got the fluid off she could be a normal
child or at least be able to do some things a typical child would. Well I found
out that day that it would probably not be the case.
It took me awhile to Google Schizencephaly. I wasn’t sure
what I would fine and I was scared that it would say that people with
Schizencephaly didn’t live for very long. I finally decided to research it to
see what information I could come up with. I knew that I would have to be
Skylar’s advocate and I wanted to be knowledgeable about her condition and
everything else about her. When I finally Googled it not much came up. You have
a little information here and there but it’s truly a very rare birth defect.
The causes are unknown and nobody can tell me how this happened to my child.
The only thing that they do know is that Skylar had a stroke in utero and that
is how she was born with Schizencephaly.
I appreciate the information of what caused it but it frustrated me that
nobody could tell me how it happened. I blamed myself for a very long time. I
was her mom and whatever happened to her was my fault. Since I was the person
that carried her it was my fault that she was born with this. I was a failure
as a mom that I could let something like this happen to my child.
As Skylar got older, we had more and more visits to ACH as
well as hospital stays. It became our home away from home. However, it didn’t
matter how many times we went to ACH we could tell someone what her diagnosis
was and they had never heard of it. We went to Memphis for a week for video EEG
monitoring for her seizures and there were at least 5 nurses that took care of
her that had never heard of Schizencephaly. After a while, you recognize the
people that have no idea what it is. They will ask you her diagnosis and when
you say Schizencephaly they will look at you with a blank stare and just say
oh. It’s obvious that they have no idea what it is but I can bet that they go
to the closest computer and Google it, if they can spell it that is.
The hardest part about Skylar’s diagnosis is that there is
no cure. I know nothing more about Skylar’s condition than I did 8 years ago. I
know more about the brain and how it functions and things associated with it
but 8 years later people still have no idea what it is. There’s also not much
research on how this happens and what can be done to prevent it. I feel that it’s
my purpose to help bring awareness to her condition. I have become part of a
few birth defect research boards and I’m hoping to start advocating with March
of Dimes and the big goal that I hope to achieve one day is to start a
foundation that can bring awareness to Schizencephaly. I would love to help
fund research so they can find out what causes babies like Skylar to have a
stroke in utero and what can be done to prevent it. I want more people to know
what it is and understand the severity of it and how it affects children and
their family’s lives.
There are disabilities out there that are popular and well
known. They receive millions of dollars in funding to help with research. You
hear about them everywhere and while that is great for them and their families
I hope that we can be the same way with these rare diagnoses. Like I read on the internet, Skylar’s
diagnosis is the most catastrophic and children do not live very long lives. Sadly,
this is the case for Skylar and there’s nothing I can do to change that. I can’t
change what happened to my baby but I hope to one day prevent it from happening
to another child. I am Skylar’s advocate and I know just about everything about
her and have a rolodex of information that I have stored over the past years in
my brain. People find it impressive I just find it essential. One day Skylar
will leave this Earth and the privilege of being her caregiver will be done but
being her voice and her advocate will live on for as long as I have air in my
lungs. Not every story has a happening ending no matter how much we pray for it
but as long as I am able I will tell her story and share the importance of
awareness and knowledge. I don’t feel as if our story is coming to end I feel
like we are right in the middle of it and we still have a lot of story to tell.
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