Helping Our Little Hero Beat Tetralogy of Fallot

My fiancé and I recently welcomed our baby boy, Malix-Kai Elijah Shepperd-Brown, into this world on September 26th, 2022, in Saskatoon, SK. Unfortunately, after his birth, we were told that our baby has a very serious heart condition called Tetralogy of Fallot, which required immediate surgery. We were told that our baby needed to be flown out to Edmonton, Alberta, for an emergency open-heart surgery, and that only one parent could accompany him due to flight capacity limitations. As a new mother who had undergone a Cesarean section less than three hours prior, I was devastated that I could not be there for my baby. I had held my baby boy for just one hour before he was taken away to the NICU.

Only a few short hours after having major surgery I demanded that the doctor approve my release so I could be with my baby who was scheduled to be on a plane to Edmonton, Alberta within the next few hours. Against her better judgment she agreed and I was given clearance to leave, I left the hospital and headed home to pack for our stay in Edmonton again only 10 hours or so after having major surgery. I was a complete wreak but I was determined to stay strong for my baby and even though I was given no pain meds at all, I assume it was because of my adrenaline pumping from the fear and the panic I barely felt anything at all. We were told that we would need to stay in Edmonton for at the very least, 10 days, and I had decided we needed drive out to Edmonton with my fiancé because he does not have a full license or own a car and I knew that I needed him there for emotional and mental support. Once packed we hit the road determined to make good time. However, only a few short hours into our trip, the pain and exhaustion set in, and I had to pull over for my fiancé to drive I was not given any medication for the pain after my c-section and was pretty much released with the basic knowledge of not to do any heavy lifting. When we finally arrived in Edmonton after a long 6-7 hour journey, we were informed that the surgery would be postponed until it was safe for our baby. We contacted the Ronald McDonald House but found out that it was fully booked, so we were given a family sleep room in the hospital.

Finally, on October 3rd, our baby had his first open-heart surgery and went into recovery six hours later. We were overjoyed to hear that the doctors were able to do a full repair. We spent the next few weeks at the Ronald McDonald House, where we made a temporary home alongside other families in similar situations.

Our son was discharged from the hospital on October 13, 2022 and we made the long journey home excited to be going home and starting our lives together. Upon arrival home we brought our older son home to meet his baby brother and my then boyfriend asked me to marry him. We were all so content and happy with life at that moment.

However, our happiness was short-lived because we were told on November 15th that our baby would need another open-heart surgery to open up his pulmonary artery.

So, on November 21st, we hit the road again in my car with our 7-week-old baby headed to Edmonton for his second open-heart surgery. Unfortunately, it was snowing and the travel conditions were not the best and during the trip, we were involved in a severe car accident that totaled my car off. We were rear-ended and hit on mine and my son’s side of the car by a huge semi-truck and trailer, and we ended up spinning into a ditch, still over an hour and a half away from our destination. Thankfully, our baby did not sustain any injuries, but we were left stranded and unsure of how we would get to Edmonton in time for our baby’s surgery. We called 911 and 40 minutes or so later the ambulance found us on the side of the highway and brought us to Vegreville hospital the closest hospital to our location. My son was the first one discharged from this hospital while his father and I barely received a good look over by a doctor, it seemed like being hit by a semi was no big deal and with our adrenaline pumping after such a traumatic experience we didn’t feel anything after the accident, at first. Except the impending worry and stress of our situation and not knowing how we would get the rest of our way to our babies surgery, We don’t know anyone in Alberta, but thankfully the hospitals here in Canada do have social assistance workers who work inside the hospitals to help families in instances like ours and they were able to find us a cab driver wiling to drive us the rest of the way, just in time for his surgery.

This entire situation has been a nightmare for us, and we have felt helpless and overwhelmed, leaving home for so many surgeries, leaving work for surgeries we have no inco right now as Tanners boss let him go after the first open heart surgery, and everyday is a constant struggle to make ends meet.