There are few memories in our lives where every blurry detail is as vivid as the day it happened. As is the story of Cooper’s condition when he was an infant. Many of our close friends and family know the details of Cooper’s surgery and rehab- but as I was recently approached by a family preparing to endure this exact journey, I felt it was appropriate to share his diagnosis, treatment and rehabilitation.
When Cooper was born we knew his head wasn’t beautifully round like Max’s was- but because Max was a cesarean we really didn’t have anything to compare it to and the Doctors nor nurses made any mention so we assumed it would just round out.
We were seeing our chiropractor when he was about 4 weeks old and she had alerted me that we needed to see our MD about his skull. Looking back, Dr. Joelle expressed just the right amount of concern- enough to know that it was important that I discussed it with our family Doctor, but not too the point where she had me panicked. Weeks later I would break down in her office and she would support me in way that a mother, health care professional and friend all rolled into one could only do. And for that (along with alerting me to his condition at an early stage) I will be eternally grateful.
When we went to our family Doctor for Cooper’s 6-week checkup, I casually mentioned that his head seemed oddly shaped. I recall seeing him assess his head then informing us we should see a paediatrician- this wasn’t alarming as our Doctor is quick to refer out when something is out of his knowledge. What was alarming was his insistence that we see one promptly (a 3-4 month wait is generally the normal, not 3-4 days). That’s when I knew something was askew.
Up until that point I really wasn’t concerned or even considered that something would be seriously wrong- but that night I spent hours on Google. Almost all of my searches lead me to a condition called craniosynostosis– where the sutures of a baby’s skull prematurely fuse together. If untreated, the soft spots close and the skull grows abnormally and can emit pressure on the brain and cause many accompanying issues including permanent damage.
I went to our paediatricians appointment with a fairly certain diagnosis in mind- while I was unsure of the treatment and future, at least I was prepared in this department. What I was not prepared for was his frantic call to the hospital to get a rush CT Scan for potential swelling in the brain. In that very moment, I lost all emotional control and sat in the truck- too paralyzed to drive 100 yards to the hospital. And I cried and I openly prayed. I didn’t really know what I was praying for or recall who I was even praying to- but it was the first time in a very long time I just let go of it all. Somehow in the midst of it all I managed to call Paul and relayed that we were being rushed for a CT Scan then instructed to go straight back to the paediatricians office. (I don’t actually recall this conversation). This was, as far as I’ve ever known, the one and only time that he’s dropped everything at a site and was on route to Red Deer to deal with the unknown.
We were able to get a readable CT Scan done fairly quickly considering Cooper was 6 weeks old and not permitted to move a single muscle to get a clear image. Returning to our paediatricians office, I was a reckless bomb waiting to explode- and the longer we waited, the more scenarios played in my head. After a teleconference to the Stollery, the radiologist confined that it was a sagittal fusion, and craniosynostosis. Tears of relief flooded my eyes as he completed another referral, this time to a paediatric neurosurgeon.
After receiving an actual diagnosis and to prepare for our first consult- I googled, networked, surveyed and read the best and worst until felt prepared enough to hold myself together during that appointment. I had pages of questions ready to ask ranging from genetics to the protocol at the Stollery Children’s Hospital- because somehow knowledge makes it easier to cope.
Dr. Mehta was absolutely wonderful- while he was surprised that I had been able to network with a local family that had undergone the exact same procedure, he was very thorough in explaining the process, risk and outcome. Because he was diagnosed at the age he was, we were explained that the procedure could be done endoscopically, and only two incisions would be needed on his head to remove the necessary bones. The fusion itself was going to be removed, as would additional slits on each side of the skull to allow for proper growth. We left that appointment and felt comfortable knowing Cooper would be in his hands and care