By Sandy Barlow
Kai was born on Friday the 13th, and despite the superstitions, I had always considered 13 to be my favourite number. He was born by urgent Caesarean section, as he was past his due date and a non-stress test showed that he was not coping well anymore. For the first few hours after birth he was managing life well, but soon his breathing became more and more laboured. His first days were rough, as he was on CPAP (continuous positive airway pressure with a mask) and teetering on needing intubation and a full respirator support, which would mean that he would have had to be transferred to either Victoria or Vancouver. All the tests, ultrasounds, etc. during pregnancy were normal, so doctors were a bit puzzled as to why he was struggling. In those first few days, we got a glimpse of the red-headed fighter as he improved, requiring less and less support, and after about a week we were sent home with our boy. No one could say for sure why he had struggled, but since he recovered without any interventions beyond CPAP, it was felt that he had “transient tachypnea” (self-limited fast breathing after birth).
Our first months at home were relatively uneventful, and he was growing and smiling. His breathing continued to be off; he would sweat when he nursed and was a poor sleeper. He tricked many a doctor, as despite this, he was gaining weight and hitting growth milestones. We were reassured that he was just “healing” from whatever it was that had slowed him down at birth. As December approached, his breathing and eating struggles were worsening, and a heart murmur was heard. Kai was quickly seen by his now-regular pediatrician, Dr. Cox, and an X-ray showed that he was in serious heart failure. A few days before Kai’s first Christmas, we met Dr. Sinclair for the first time at Victoria General Hospital. Kai was diagnosed with a severely dysplastic mitral valve, so he had severe stenosis and regurgitation. His left atrium had enlarged significantly to try to accommodate, and his lungs were taking the brunt of the extra pressure from blood not being able to get from the lungs to his body properly. We were told that he would have to have surgery fairly soon, and he was put on a few medications, including Lasix (a diuretic/water pill). Almost overnight, he lost several pounds of retained fluid weight, and it was clear that our boy was not “growing well,” as he then fell off the growth curve. Mitral valve disease in babies is a tricky thing. If they can in any way possible, they will try to repair mitral valves, especially when they are still infants (even if only buying a few more years before replacement to allow babies to grow more). Replacement is tough, as tissue valves just do not last well or for very long in the mitral position in kids, and mechanical valves often do not fit properly in babies and then come with the required blood thinners of warfarin and aspirin. Early in the new year, the team at BC Children’s Hospital met, and we were told that while they would try if at all possible to repair, Kai most likely would need a mechanical valve. This was very tough news for us, and so many questions and concerns. There are not a lot of babies who get mechanical valves. What we could find online was a lot of anxiety about warfarin, and the medical literature was not helpful or reassuring. Dr. Sinclair did connect us with a few families who had walked the mechanical valve journey, but only one had done so as an infant. Those early phone calls to other moms were most supportive and reassuring. Kai had his surgery in early February (yes, heart month), and unfortunately, Dr. Gandhi’s only option was to place a mechanical valve.
Kai’s first post-op year was not the smoothest. Warfarin is a finicky drug at the best of times, as diet, illness, and growth can all affect how it works, and it is even more challenging in a baby who is not even eating solids yet. We were well supported by both Dr. Sinclair and Dr. Halparin (BCCH hematologist) and the echo technologists, but our most important medical supports have been the nurses involved in Kai’s care, including Anne (Victoria General Peds) and Deborah (Nanaimo Hospital Peds). Jane Braun, who was Kai’s thrombosis nurse at BCCH, helped in so many ways, from sorting through big highs and lows in INR readings, troubleshooting our home INR monitor (which is a positive game changer for anyone on warfarin), and advocating for Kai on so many occasions. We were sad to have to say goodbye to her when she retired last year. Kai unfortunately had two blood clots on his mechanical valve in his first post-op year that required him to be air-lifted back to BCCH for clot busters (tPA) in the ICU. The first time he was really sick; both leaflets of his mechanical valve were clotted and getting worse with every hour that passed. We were lucky that the medications worked and he did not need emergency heart surgery, but those 24 hours had taken a toll on both him and us. He was then put on a higher anti-coagulation regime, and that came with its own set of challenges and anxieties. Soon, though, in what seemed like the blink of an eye, he was three years old, and life had settled enough to consider sending him to preschool or daycare.
We were so lucky to have connected with other local heart families through the Children’s Heart Network when Kai had just turned one year old. My only regret was that I wished that we had connected sooner, right when Kai was diagnosed. To meet and see so many heart families who are thriving despite so many major diagnoses, big surgeries, and many obstacles has been an anchor to our lives. I joke that few people would know that our kids have heart conditions when they meet our crew at Starbucks, the pumpkin patch, the Vancouver Aquarium, etc. Such active, wildly wonderful kids just being kids. This year we had the opportunity to attend the Island Heart Families Camp, and it was so wonderful to meet even more Island families. What a gift CHN is!
Over the past few years, we have watched Kai grow, explore, and live every moment to the fullest (including starting school this year). Many of our worries about him not being able to participate in activities like other kids due to his heart and warfarin have faded away. Sure, things like contact hockey or football will not be a part of his life due to his increased bleeding risk, but few other activities are off the table. Letting him run, play, climb, ride his bike, and be an active boy has allowed him to develop his spatial abilities to balance, know his body, and reduce his risks of falling and getting hurt. We have a saying around our home of “no bubble wrap needed.” Kai faces a few more open-heart surgeries as he grows out of his mechanical valves, but we know that we are in good hands at BC Children’s Hospital and the travelling outreach programs here on the Island (it is so nice to see Dr. Sinclair closer to home when he comes up to Nanaimo Regional General Hospital) and that Kai and our family are supported by the Children’s Heart Network and the families that makes it a thriving organization. ♥
“Kai’s Story” is from our fall 2019 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.