Celebrating a Life Saved and a Life Remembered

On May 8, my curious, caring and happy daughter Addison will be celebrating a milestone I honestly wasn’t sure she – and we – would ever see: 10 years with her gifted heart. That’s 10 years of life, 10 years of growing, 10 years of learning new things, 10 years of loving and being loved. It’s all thanks to the generosity of her organ donor Audrey and Audrey’s mom Felicia.

We have crammed in a lot of living in the past decade, always mindful that every minute with Addison is an extra one. But we have also learned a lot about what it’s like to live with a chronic disease. Despite what many people believe, Addison’s beautiful new heart isn’t a cure for her congenital heart defect. Yes, it has ‘fixed’ the problem of the faulty heart, but to take care of her transplanted heart, she has been taking potent immune-suppression drugs since the day of her transplant.

That means we have been living the ‘pandemic lifestyle’ for a lot longer than the past year. Hand sanitizer, disinfecting wipes, reminders to family and friends not to visit when sick. Those have been routine in our house since Addison came home from the hospital. As the days, weeks and months took us further from the immediate post-transplant period, and Addison’s health remained good, we slowly let our guard down on the germaphobe front.

But when COVID-19 emerged, our family went back into battle mode. While others have been a little more ‘flexible’ in their interpretations of the public health guidelines and more willing to take some risks, such as allowing their kids to return to after-school sports and activities, we have not. Both Addison and her sister Charlie are back at daycare and school, but nothing else that involves additional kids and people. We basically spend all our free time hanging out with each other.

Everyone finally has a small peek into the life of someone who is immune compromised. For those who thought we were paranoid post-transplant over the past nine years pre-COVID-19, I feel vindicated. Imagine if this was your whole life, day in and day out, not just for a year or two? For the longest time after Addison’s transplant, I’d cringe inside anytime I heard someone cough, or see them wipe their nose with their hand. Chicken pox or measles outbreak in the community? Depending on how close it was to us, we would keep Addison at home as a precaution.

This is why my husband Aaron and I advocate and fundraise for transplant research, focusing specifically on the needs of pediatric patients. We want transplant to be a cure so there is no longer a need for recipients to take these drugs, putting themselves at high risk for infections, not just COVID-19, and other serious – and potentially deadly – health issues such as cancer, diabetes, and kidney failure. We have learned so much since the first human to human heart transplant 54 years ago, but there is still so much we don’t know, especially about children and their unique immune systems. For example, right now, there are urgent questions around the efficacy of COVID-19 vaccines in transplant recipients. All the research done up until this point has been on adults.

Getting to ten years post-transplant is incredible. Now, 15 and 20 years, and even beyond, don’t seem quite as impossible. But while I am so grateful transplant was a viable option for Addison, and for Audrey’s gift, I just want my daughter’s future to be the same as every other child’s. I don’t want to rejoice every time we celebrate another Christmas, or birthday, or heart-iversary. I want to assume I’ll get to see her graduate from high school, go to university, fall in love, find a fulfilling career, get married. I don’t want Addison to die before me. That’s the painful truth of transplant.

However, I don’t dwell on the negatives. I don’t let the hard reality sneak into our thoughts too often. Instead, as a family, we focus on what is possible. Addison has been able to experience so many things in her first decade of life…more than what some people accomplish in their entire lifetimes. When there is no guarantee of the future, you have to take every opportunity you can to live.

This journey has taught me a lot and has given me so much. My passion for raising awareness about organ donation, advocacy and fundraising efforts for transplant research, and choice of career are all a direct result of Addison. Being a transplant parent has shaped my perspectives about parenting, and even dramatically changed our family structure (we had always intended to have just one child). Would I trade it all for ‘normal’? I used to say, without hesitation, ‘absolutely’! But frankly, it’s not worth the time to dwell on what isn’t possible. And now, I want it all. Let’s focus on what is possible. We are on this transplant road and Addison’s future hasn’t been determined yet. We can make transplant a cure, together.

Elaine Yong, mom to heart recipient Addison and TRF board co-chair

Help children, like Addison, live a long and healthy life, donate today to support pediatric transplant research.