When Jamie was born, we wasted a lot of tears grieving something that we’ve come to learn is a blessing. We were given an unexpected birth diagnosis of Down syndrome. There is a lot of unknown when you have a child with a disability. What will their capabilities be? What will their future look like? The unknown is a very scary thing. However, three years into our journey now, we know that a life with Down syndrome is an amazing one despite all of the challenges.
Jamie was admitted for the first week of his life due to low oxygen and eventually for light therapy for jaundice. When we finally went home, we thought we were in the clear.
Approximately 50% of children with Down syndrome are also born with a congenital heart defect. Chest x-rays were completed and we were given the “all clear” from heart issues. But just as an extra safety measure an echocardiogram was scheduled for two months later.
During those two months, we now know that there were a lot of signs of something being wrong that we should have noticed. There were a lot of days where our son struggled to breathe and we didn’t understand he was struggling. We were even admitted to the hospital at one point for low oxygen and no one noticed the heart murmur. Jamie slept quite a lot and he barely ate – something we just attributed to having Down syndrome as these can also be common issues without a heart defect.
By the time Jamie had his echocardiogram at two months old, he was already in early heart failure. We were finally given a diagnosis of the atrioventricular septal defect (AVSD) and referred to McMaster Children’s Hospital. This meant that Jamie had holes between the chambers of the right and left sides of his heart, and the valves that control the flow of blood between those chambers were not formed correctly. He was started on a diuretic medication to help flush his system more frequently and efficiently and Jamie’s case was presented to surgeons at the Hospital for Sick Children.
For the next four months, we worked towards helping Jamie stay nourished and gain enough weight for surgery. Generally speaking, Jamie was a beautiful happy healthy baby. He learned to roll over and had the sweetest smile – along with his incredibly cute chubby cheeks.
When surgery was finally scheduled at six months of age, Jamie had plateaued at a weight of 12lb. The fear of handing your child over to a surgeon to save their life versus that supposed life-saving surgery possibly being the cause of his death is a feeling I will never fully be able to describe. It was an incredibly emotional time.
Jamie underwent a 6.5-hour open-heart surgery on April 10, 2018. His amazing Sick Kids surgeon, Dr Haller, closed the ventricular hole with a synthetic patch and reformed the common atrioventricular valve then subsequently used it to close the atrial hole. Jamie had issues awakening from the anesthesia and the neuro department had to completely reverse his sedation. Once that happened, Jamie woke up and only had minor speed bumps in his recovery. We were able to leave the hospital after only four days. He was a true warrior!
Because of Jamie’s heart issues, things that weren’t an emergency took a back burner. Jamie failed his newborn hearing screening and following a slew of hearing tests up to the time of his heart surgery, audiologists wanted to try ear tubes to drain the fluid before they went the route of hearing aids. Due to his heart condition, we weren’t able to schedule ear surgery until after his heart surgery so Jamie lived the first 8 months of his life with moderate hearing loss – something that has likely played into his speech delay now that he is older. At 8 months Jamie had surgery to place bi-lateral ear tubes, thankfully a very quick day surgery procedure. Unfortunately, even with the removal of fluid from Jamie’s middle ear, he still wasn’t able to hear like his audiologist was hoping would happen. After ongoing discussions and another surgery 11 months later to place a second set of ear tubes, Jamie finally got his hearing aids. We could see right away these aids were sorely needed as he showed improved hearing and speech almost immediately.
As Jamie got older, we had quite a few issues with reflux and had to start thickening his fluids to prevent choking. We also discovered that he has asthma. Jamie has struggled with basic germs. He gets sick very easily and has been hospitalized with pneumonia and low oxygen 5 times so far in his life on top of his other hospitalizations.
He has always struggled with sleep quality and we suspected sleep apnea, common with people that have Down syndrome. Getting a sleep study in Ontario is a slow process but after nearly two years on the waitlist, his sleep study was done at Sick Kids and Jamie was diagnosed with moderate obstructive sleep apnea. He also had his fourth surgery to remove his tonsils and adenoids to hopefully help his sleep apnea. For children with Down syndrome, this requires short hospital admission. Thankfully Jamie has thoroughly recovered now, though we don’t necessarily believe this has solved his sleep troubles. He will have a repeat sleep study in the next few months to assess where he is at that time.
In addition to appointments with a cardiologist, respirologist, and GI doctor, Jamie sees multiple speech-language pathologists, occupational therapists, and physiotherapists help with speech, gross & fine motor skills, and hypotonia (low muscle tone) all very common for people with Down syndrome. Jamie’s heart is doing incredibly well and at the current time, there is no need for additional intervention, though we don’t know what the future may hold.
Though Jamie has gone through quite a bit in his short three years of life. We wouldn’t change a single thing about him. Jamie is exactly the person he is supposed to be. He attended a regular daycare until COVID-19 hit (as we’ve since been keeping him home to keep him healthy) where he was quite the celebrity and loved by all. He is a loving, caring, adorable, intelligent, hilarious, boom-crash-smash stereotypical boy with a heart of gold. His smile is infectious and you’d be hard-pressed not to fall in love with him at first sight. He loves the Wiggles, Blue’s Clues, Thomas the Train, dancing, and singing. We just registered him for JK in the fall and are hopeful that the pandemic will have slowed enough by then that he can attend.
In June 2019 we used some of Jamie’s Wish Fund to travel to Mexico as a family for some much-needed rest and relaxation. That fall, Guelph Wish Fund organized a meet-and-greet with the Wiggles cast at a performance in Hamilton. We are so grateful of the Guelph Wish Fund for Children and its donors to enable us and families like ours to have the opportunity to unwind from the challenges we face. These opportunities give us renewed strength to fight another day.
- Vanessa and Aaron