Our fun, loving, energetic middle son was born April 4th, 2013, weighing a healthy 8 lbs. 4 oz. with hair so white we could barely see it! Immediately, we were in love with our family’s newest addition. His older brother, Cole, finally had a sibling after five and a half years of being an only child. We were so excited!
Once at home, it didn’t take long to realize that Mason seemed to be in pain all the time. He was very fussy, especially when he was placed on his back. I took him to a “well check” and mentioned my concerns to our family doctor, who referred us to a pediatrician.
The pediatrician determined that he had “reflux,” and Mason was given medication. This helped some; however, he was still very unsettled. I didn’t know why, but I knew something wasn’t right. I gave him pain meds when he was really uncomfortable, and he had to sleep sitting up, or he wouldn’t sleep at all.
When my brother-in-law, a doctor, came for a visit to meet six week old Mason, he raised concerns about the shape of his head. He asked if we would consider a C.T. scan. “Of course!” I said.
An appointment was scheduled with a neurosurgeon following the scan. My sister-in-law accompanied us to the appointment in which the neurosurgeon told us that the shape of Mason’s head was positional, and I was given pamphlets on the helmet that would correct it. We were told there was a strong possibility that Mason had “Arnold Chiari Malformation”. I immediately asked what that was and what the symptoms were. Hesitantly, she explained that basically, his skull is compressing his brain. Almost every symptom she mentioned sounded like what Mason was experiencing, but she said Mason was far too young to be symptomatic. I never felt so helpless in my life. I tried to put the words “Arnold Chiari Malformation” out of my mind, but, for some strange reason, it was all I could think about.
Fast forward to a couple of months later. I took Mason to a friend’s baby shower. Over the course of two hours, he went from being a healthy baby to have a terrible cough and laboured breathing. I took him to the emergency department, where he had a chest x-ray and oxygen treatment, and we were sent home with puffers.
Two days later, our family doctor called to check in on Mason. When asking what medication he was on, I replied, “puffers.” He then proceeded to tell me that Mason had pneumonia and not to use the prescription.
After Mason seemed better, I started him back on solid food as he seemed to be choking on it while he was congested. As soon as I did this, we ended up back in the emergency department the third time. I needed answers!
I called my brother-in-law. He found a colleague at McMaster who could see Mason the next day who said he shouldn’t have had pneumonia three times back to back at seven months old. The pediatrician examined Mason, said he was a very sick little boy and she would get to the bottom of his illness. If he became worse by Sunday, I was to bring him to McMaster Emergency, where she would admit him, and he would not go home until a diagnosis was determined.
Over the course of the weekend, Mason was struggling to breathe and declining, not wanting to eat, sleep or play. I took him to McMaster, and he was admitted immediately. The next few days were tough as he was poked and prodded, seeing every team of specialists you could imagine. They were wonderful. But they were stumped at why Mason was so sick.
My sister-in-law, a nurse practitioner in NICU, also was stumped. I reminded her of our conversation with the neurosurgeon, as she had been with me and asked her if it could be “Arnold Chiari Malformation.” She said that she had forgotten about that diagnosis. An MRI was scheduled. After what seemed like forever, they called me into recovery to be there when Mason woke. As soon as I entered, I immediately noticed the neurosurgeon standing at his bedside. She pulled up the scans and explained to me that Mason’s skull is compressing his cerebellum (the base of his brain). He would need surgery to relieve the pressure, and she had booked the O.R. for Monday morning. Following an excruciating six-hour surgery, the surgeon appeared and said the surgery was successful. We could see Mason in recovery ICU.
After three long weeks, Mason came home. He started outpatient therapy almost immediately with an occupational therapist for swallowing, a speech pathologist and a nutritionist. All made regular visits to our home. He also had swallow studies and regular MRIs with his team at McMaster.
Mason has spent most of his life receiving therapy and has regular checkups at McMaster to keep an eye on his “Arnold Chiari Malformation” and the syringomyelia (fluid-filled cyst) in his spine.
Although the surgery removed two of his vertebrae to make room to alleviate the pressure on his brain, he will require further surgery. For the moment, he is living the best possible life he can. We are forever grateful for the care and support he has received over the years.
Thank you to the Guelph Wish Fund for Children for all that you have given our little man. He enjoyed his Polar Express Ride and is enjoying his little snow scoot and trampoline. Nothing makes him smile more…
The Callen Family