by Eric Cytrynbaum
We found out we were having twins during a week-13 ultrasound. At a week-19 ultrasound, we found out that the girls were in the same amniotic sac, which made for a precarious pregnancy, and Baby A was diagnosed with a CHD. Over the next few weeks, follow-up ultrasounds revealed that she had a rare condition called right isomerism—her internal organs had somehow developed with roughly mirror-image right sides instead of the usual left-right arrangement. This meant a more symmetric-looking heart with several anomalies (AVSD, double-outlet right ventricle, pulmonary atresia, two symmetric SVCs) and no spleen (a left-side organ). The prognosis was not encouraging, with a 15% chance of surviving to the age of five and the best-case scenario being a series of surgeries (BT shunt, Glenn, Fontan) to reconstruct a single-loop circulatory system around her two-chambered heart. Long term, we watch for valve leakage and ultimately congestive heart failure. But not for a few decades.
We’re now almost two and half years past her third and final scheduled surgery. The girls will be six in a few months. We’ve been extremely lucky. Aside from twice-daily meds, surgical scars, and an annual visit to the BC Children’s Heart Centre, there are few signs that she is different from her friends at school. When the kids take off at full speed across the soccer field, or we hit a hill on a hike at Lighthouse Park, her heart can’t keep up and she has to take a break. We talk about her special heart and how she can call for a break whenever she needs one and how important exercise is to keep her heart strong. But she struggles with understanding why she gets left behind and sometimes asks why the other kids don’t want to play with her.
So what can a parent do to help a kid that can’t always keep up? Open communication about her challenges is certainly important. Teaching her to self-advocate is also big. But I also want her to have a place where she CAN keep up. Enter biking…
The girls started on balance bikes when they were about two and a half. By four and a half, they were riding “big girl” bikes with hand brakes. I started taking them on the trails in Pacific Spirit Park and they loved it. Mostly flat ones to start but occasionally slight hills which proved a bit of a challenge. About this time, a friend got an electric bike for commuting and I started to think that maybe an electric bike was the answer.
When I first walked in to Grin Technologies and explained my plan, the guy at the front desk asked me if I seriously thought it was a good idea to put a five-year-old on an electric bike. Three trips to Grin, a few more to my local bike shop, and a lot of fiddling later, her bike is up and running. For the first couple rides, while I was still figuring out the settings, I’m pretty sure the motor was just ten pounds of dead weight holding her back, but she was so excited to be riding with it that I could barely tell. With a torque sensor in the bottom bracket, the entire system can be hands-free, meaning she can focus on riding. The onboard computer can tell how much power she is pumping into the bike and directs the motor to supplement according to a pre-programmed setting. She just gets on and rides.
I also wanted this setup to be as reversible as possible, so in about five minutes, I can switch out the motored wheel for a regular wheel and strip most of the wires and hardware. That way, she can take the bike to the neighbourhood park and I don’t have to worry about $1000+ of high-tech gear disappearing. When we go trail riding, I can quickly switch back to motorized.
If you’re thinking of doing something similar, I can offer some thoughts. First, the price tag is not small, but with Grin’s conversion kits it’s easy to move the setup from bike to bike as she grows. And given the low power requirements, these motors will last a long time. So think of it as a long-term investment. The biggest challenge for me still is remaining convinced that the motor is going to help in the way I envision it—giving her breaks when she needs them rather than replacing exercise. It’s still not clear as we’ve only been out with it a handful of times. Grin was very helpful with some of the technical aspects and my local bike shop had to fill in others. Then I had to do a bunch of fiddling to put it all together. Feel free to contact me for technical advice.
Finally, some thank yous are in order. First, to the incredibly dedicated doctors, nurses, and other staff at BC Children’s Hospital, in the Heart Centre, the NICU, the PICU, and 3M, without whom I wouldn’t even be talking about taking her biking and who took great care of all of us. And thanks to Grin Technologies and Kissing Crows Cyclery for helping set us up with a great bike. ♥
“An extra push for a two-chamber heart” is from our fall 2018 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.