My son’s story began when he was just an infant…
There’s something wrong with Chase. A mother can sense these things. My son was going through life like every other little boy, but in my heart, I knew that he was different than the other kids his age. I took him to the doctor time and again and expressed my concerns, but the doctor didn’t find anything that he felt was unusual.
Then, when Chase was two years old, an optometrist noticed that he had
Nystagmus, an involuntary movement of one of his eyes. Suddenly, there were serious concerns about a potential medical condition. Less than a month after the discovery, we found ourselves meeting with an ophthalmologist at McMaster Children’s Hospital. Although we were nervous, the ophthalmologist was fun and outgoing, and immediately put us at ease. After examining my “average” three year old, the ophthalmologist recommended that an MRI be done as a precaution. It was scheduled for just a few months later.
Sedation is never an enjoyable experience for a young child, nor is it easy for the parents. There are a few different ways to make this successful if a child is not cooperating and, unfortunately, Chase had to have his body wrapped in a blanket with just one arm left out for them to insert the IV. The first attempt failed. The second attempt seemed successful at first … but Chase wouldn’t stop squirming and the IV came out. Another failed attempt.
They finally inserted the IV into Chase’s foot. Success.
He screamed himself to sleep. As I watched him lay limp in his father’s arms, it was a heart-breaking relief. It seems too much for a child to have to experience.
The MRI revealed swollen optic nerves and raised
intracranial pressure. The emotions were overwhelming.
After a rapid journey of additional rounds of anesthetic and tests, the doctors determined that Chase had
Craniosynostosis. Premature fusion of Chase’s sutras (soft spots) had caused his brain to be compressed.
It was the scariest moment of our lives. Chase was so young. His friends were his doctors and nurses. And he was completely clueless as to what was going on.
Since then, Chase has had several pieces of his skull removed so his brain can grow (the procedure is called a “decompressive craniectomy”). His first surgery was back in 2010…the same year our second child was born. As parents who have gone through so much to understand what is going on with our ‘baby’ how do we then choose who to stay with? Our nursing baby (who wouldn’t fully take a bottle) or our 3 year old while in ICU? A decision as such was not clear to us but we were fortunate to have been presented with an opportunity to reside at Ronald McDonald House in Hamilton while Chase was at McMaster Children’s Hospital. I could stay in the hospital with Chase and have Chloe nearby for feedings.
Having volunteered in the home prior to ever needing it’s services, I had been fortunate to know where everything was, however it was quite a surreal feeling to be the one taking the plate for supper. I quickly learned just how valuable donations of food and time were to the home and waiting room within the hospital
Since then our family has participated in the
Footsteps for Families to raise money for the home and each time we are in the hospital for short stays, we make a stop at the waiting room or the home to drop off a food donation.
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| Picture of Chase in 2012 holding the food we brought to drop off at the family room in McMaster Children’s Hospital. |
Our family will be forever grateful to Ronald McDonald house as it helped heal an already challenging situation.
The Berube Family.
Want to help Jamie & Chase support the Ronald McDonald House in Hamilton? We are walking together in the Footsteps For Families Walk-a-Thon Fundraiser for Ronald McDonald House Hamilton on June 9th. We are looking for sponsors for "Team Happy Feet". You can
join our team and seek out your own sponsors or perhaps you will consider making a donation? You can do either one here:
http://my.e2rm.com/TeamPage.aspx?teamID=370984&langPref=en-CA
Thank you for your support!!