This is a tough throw back for me- I remember very clearly the night we got the news on Hayden's brain function back in March 2012 and I remember thinking wow- this must be the worst kind of news he (Dr. Licht) has to deliver to parents. Unfortunately it does get worse- and just a few months later we heard exactly just how bad the news he has to deliver to parents really can be...
3.30.12
Just over two weeks ago, we found out Hayden would
undergo his first surgery the next morning at 6am. Immediately afterwards we
were approached by a few people about participating in some research studies.
My mind was already swarming with thoughts so I tried to act interested but was
really just wanting to get back to Hayden and spend every minute with him. Lucky
for me, Rob had his head on a little straighter than mine and was somewhat
processing what they were saying to us. We were asked to participate in three
studies related to his condition and operation. We said no to two of them, and
one we were considering. The one we were thinking of participating in involved
Hayden having an MRI before surgery and then a follow up a few days later to
see if the surgery, being on bypass mostly, causes any change in brain function
that may relate to learning disabilities that are so common in HLHS
babies/kids.
Rob and I both felt it was important to participate in
something that may benefit other HLHS babies down the road since so many before
us had helped get the process to where it is today. I hesitated simply because
this was my baby and he was already going to go through so much. In the end, we
agreed to Dr. Licht's study on brain function.
Hayden had his first MRI right
before going into surgery. The results came back clear, Hayden's brain looked
great! One week after surgery they performed a second MRI. The results we
received that night from Dr. Licht were and still are devastating. In just one
week, Hayden's brain function went from great- to significantly
damaged.
The neurologists are perplexed by these findings simply because
the part of his brain that is damaged (PVL) typically occurs in premature
babies, coding, or other things that cause extreme lack of oxygen to the brain.
It seems there are two thoughts on the cause- his seizures, or being on bypass.
I don't know that it even matters what caused it, really. But I can't help
wanting someone or something to blame. When we first found out about Hayden's heart
condition, I found myself questioning my previous actions and wondering if it
was something I did that caused it. I find myself doing the same thing with his
brain damage- had I chosen a different hospital, a different surgeon- would the
outcome still be the same? In my head I know that nothing would have prevented
this from happening but in my heart and as a mother I can't help but want
something or someone to blame.
This news was and is harder for Rob and I
to handle than his heart issue-simply because there is no definite fix for his
brain like the heart surgery. And the 4 months of unknown that we experienced
before he was born was torture enough- the unknown with his brain damage is
indefinite. I fear with every milestone we miss I will mourn for my son and be
in constant fear of his ultimate outcome.
It has been one week since we
were given the news on Hayden's brain damage and we've already come a long way
in the healing. For days I couldn't speak to anyone, not even my family or best
friends simply because I had nothing to say- nothing positive anyways, we had
lost all hope and faith in everything. Today we are hopeful and full of faith
that Hayden will be given every opportunity under the sun, moon and stars to
overcome this life sentence. Rob and I again thank God that we were given the
gift of knowledge. Had we not agreed to Dr. Licht's study, there is a great
chance we would have never had an MRI for Hayden and by the time we figured out
that his delays were not associated with his heart recovery, we would already
be so behind in the healing process for his brain.
Hayden is a heart
warrior so we know he has a lot of fight in him. We have all the faith and hope
in the world that he will fight like a warrior through this too. Thank you for fighting
for him right along with us.
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