On Oct 16 2020, Ben and Katie celebrated the birth of their little boy Charlie, weighing a little 6lb11oz. When he was only 24 hours old, after the discovery of a heart murmur and an emergency transfer to B.C. Children's Hospital, they received the devastating news that little Charlie had several congenital heart defects and would require multiple heart surgeries early on in life. When he was five days old, Charlie had his first procedure to dilate the aortic valve and was discharged from the ICU the following week, with the hope that he may be able to wait a few years before requiring further intervention.
Unfortunately, over the next month, he was in and out of the hospital 4 times with congestive heart failure until on November 27th, he was readmitted and intubated, following a sudden and drastic decline in his condition. Being as small as he was, the surgical options available to Charlie were limited. After his doctors agreed that he would likely not get matched with a donor in time for a transplant, the decision was made to put Charlie on a medical transport plane and send him to the Hospital for Sick Children in Toronto, where, 4 days later, Charlie underwent open heart surgery. While the surgery went as well as could be hoped for, his condition is complicated and he will require at least one more major surgery, likely multiple. He remains in critical condition, on respiratory support and sedated while the next steps are figured out.
Katie has been in Toronto with Charlie since he first arrived over a month ago. Ben was able to join them for a few days around Charlie's first surgery, but then he had to return home to take care of their 19 month old daughter Isla and get back to work. We don't know yet when the next procedure will be, but Ben will have to fly out again for it, whenever it is scheduled in the next few weeks.
Due to the covid restrictions and lockdown in place in Toronto, only one family caregiver is allowed in the hospital with Charlie so Katie spends all day by his side, reading to him, doing his physio and advocating for him to his medical team.
Living 5000 km apart when they should be at home, together, enjoying their newborn as a family has been heartbreaking for this family especially over the holidays. Expenses are high and have added another burden to their already difficult circumstances. Thankfully, medical procedures are covered but there is still added cost of medications, Charlie’s special feeding supplies, travel and living costs away from home and off work.
- diane korvin
- Cindy Hiebert
- Richard Matiachuk
- David Matai
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