My son and I both needed heart transplants. This could have put us at risk.
Organ transplants have saved more than 1 million lives in the United States alone since the first one in 1954. That’s 1 million people granted a second chance at life, and 1 million families who didn’t lose a loved one.
As one of those transplant recipients, and a mother to one, I know firsthand how precious a donor organ is. When I was just 26, I was diagnosed with peripartum cardiomyopathy, a rare form of heart failure. Not long after I finally received my transplant, my 13-year-old son, Micah was diagnosed with Danon disease and hypertrophic cardiomyopathy that left his heart functioning at just 7%. He, too, received the gift of life in the form of a heart transplant.
My son and I survive, and thrive, because of this life-saving procedure, which is why it saddens me when the technology designed to improve transplants goes unused simply because patients aren’t aware it exists.
When I received my new heart in 2018, almost all donor organs were still transported in cheap plastic ice coolers you can find in the sporting goods section at big box stores. Within just a few years, technology had advanced and Micah’s heart was transported in a medically-cleared storage container specially designed for protecting donor hearts.
We called it his “hope in a box” because of everything it represented to us. My son told me it made him feel better knowing that his new heart was so well protected. It comforted me knowing medical technology was on my son’s side.
Despite the growth of organ preservation technologies, many donor organs are still transported in unregulated consumer ice coolers, even when the medical consensus says that ice is too cold and can cause irreparable damage to organ tissues. Most transplant patients and their families aren’t even aware that there are different ways of transporting donor organs, or the difference they can make in survival outcomes and complication risk. In a recent case in Italy, sharing more information and giving options to patients and their families could have made a monumental difference in a young boy’s life.
A right to choose hope
I am grateful that technology has come a long way since I received my heart transplant. I remember the years living with a pacemaker, the months waiting in the ICU and the day I learned I was finally going to receive a new heart. I also remember feeling heartbroken when I learned that my son would have to go through what I did. Yet I was hopeful that medical advancements would give him an even better chance of success. I don't know how I would've reacted had I known that his heart or even my own could have arrived in a way that put it at risk.
But that’s the reality of the current system: Some of the most critical decisions that affect patient outcomes are made by clinicians without any say from patients themselves or their families. No one is told that a choice even exists, though it hardly seems like a choice. What patient, parent or loved one would actively choose the option that introduces greater risk?
The transplant journey is often long and arduous. In my experience, it requires complete trust of the medical system, which left me feeling vulnerable at times. The path is fraught with twists and turns whether you’re the one waiting for a new organ or a loved one along for the ride. Patients need to be certain that their medical teams are doing everything possible to ensure transplant success, and that includes giving them a voice in the process.
The irony is that we would never dream of transporting a priceless work of art or a delicate piece of space technology in a plastic bin from a convenience store. Why, then, is it still the status quo for the most complex and precious technology on earth: The human body? Micah’s “hope in a box” shouldn't be a luxury or a stroke of luck, it should be the baseline that grants every patient peace of mind. Because when it comes to saving a life, “good enough” should never be the standard.
Brittany Clayborne, PsyD, is a heart transplant recipient and a mother to a transplant recipient. Today, she helps lead Transplant Teenz, a national nonprofit supporting teens navigating transplant. After witnessing advanced organ preservation technology used in her son’s transplant, she is a vocal advocate for patient awareness, choice and improved standards of care.