I have to say that I feel extremely fortunate that we have the health care
system we do and the most amazing hospital to deal with. Sick Kids Hospital
does this surgery at least once a week. Although Coronal Synostosis is not a
common condition, (it occurs 1 in every 2000 births) it is a common condition
at this hospital which makes it easier to cope with as well. The team who will
be taking care of Spencer is made up of Neurosurgeons, Plastics, and
Ophthalmologists. They do the surgery the traditional way and not the
endoscopic way. When I first heard this I was ready to find somewhere that
would do it endoscopicly. This way is a much less invasive surgery that
involves the use of an endoscope. The endoscope is a small tube which the
surgeon can look through and see immediately inside and outside the skull
through very small incisions in the scalp. The surgeon opens the suture to
enable the baby’s brain to grow normally. This type of surgery is followed by
the use of a molding helmet. The more traditional surgery is an incision that
is made in the infant’s scalp from ear to ear. The shape of the head is
corrected by moving the area that is abnormally fused or prematurely fused and
then reshaping the skull so it can take more of a round contour. Over the years
a perfect mold has been made (so there is no more Art in it) and they use that
mold to create the “perfect” head. Surgery can last up to five hours. The baby spends
one night in the NICU plus an additional 5 days in the hospital for monitoring.
Another major fear that I have is that there is likely a blood transfusion that
will be necessary during this type of surgery. I confronted the doctors about
why the endoscopic surgery is not done here and they basically explained that
in their research it is not as effective as the traditional surgery and it usually
requires a second surgery later whereas they have found doing it the
traditional way is one surgery, no helmet and very little complications later
on. I have to trust that they know what they are talking about so traditional
surgery is the road we are heading down.
In regards to the blood transfusion there is one thing that is comforting
and that is that my husband and I will be tested to see if we are a match. If
we are than they will bank our blood and give that to him instead of having to
go to the Canadian Blood Service. I am hoping that my husband is a match as they
will be able to use all of his blood whereas if I am a match they can use parts
of my blood but not my plasma. We were informed that the Canadian Blood
Registry is not currently using female plasma in surgeries and I’m not exactly
sure why. This is one thing I am going to look into and post soon.
Our next two appointments have arrived in the mail and this is what they
are. On March 30
th we will be seeing an ophthalmologist to make sure
Spencer’s optic nerves are still healthy and that all is progressing as it
should. We had an appointment a little while ago because we were concerned that
he was not seeing but we know now for sure he is as he grabs for things,
recognizes people’s faces and is overall meeting all of his other milestones.
He is even trying very hard to crawl. On April 13
th we will have our
next Plastics appointment, where we can ask more questions and inform them of
our decision to go through with the surgery. We have pretty much decided now
that we will be going ahead with it and it looks like it will take place in
June.
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| Spencer at one month |
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| Spencer at two months |
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| Spencer at three months |
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| Spencer at five months |
Hey Alana,
ReplyDeleteI am a childhood friend of Geoff's and I saw this blog on his FB.
Spencer is a lucky baby. You have a huge job of balancing information and best interests, and the right thing to do and you are clearly doing a very good job of it!
One thing I learned early on in the parenting process, when working with the medical establishment (and interestingly enough, I learned it from them) is that I was the specialist in my child, even if they were the specialists in the condition we were dealing with. We were lucky enough to work with a 'team' that considered us an essential part of itself, since in fact, we knew our kid, as no one else did.
It was massively confidence boosting to hear from the Medical people that once we learned about the condition, we would be far more knowledgeable than they were about our kid, or than they ever could be.
To this day (it happened this week, actually- very nearly 16 years in) we are confident in our ability to get more information if we need it and then to make a decision, without hesitation. Like I just KNEW this week that a proposed programme for my kid was too late in coming and in fact would not help him, but just confound the situation, if we proceeded with it. If it had been offered two years ago, we would have taken it...but not now.
Anyways, like I said, Spencer is a very lucky baby. I just wanted to tell you my own experience, because regardless of the reason (and ours are not the same) you are the specialist in your child. And you are clearly informing yourself to become a specialist in his condition too. With this approach you can only win, because you will always do the next right thing for YOU(plural.)
I am on Geoff's friend list, if you want to contact me. Actually, Tamara's too!
Andrea
Hi there, Spencer is beautiful. How are you all doing? Can i put your blog on my FB page, would really love to help raise the profile. Please send my love to all the family. x
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