A Mother’s Love, A Child’s Strength
The Devennie’s
Jessica and Steven Devennie had been married for two years when they became pregnant with a son. The couple was beyond excited, and for the first nine months of James’s life, their home was filled with bliss. That is, until James was examined for his lasting symptoms of a cold, and the doctors called in a cardiologist to do an echo. Soon after this hospital visit, he was diagnosed with restrictive cardiomyopathy, a condition that led him to need a heart transplant soon thereafter.
When Jess got the news that James needed a heart transplant, her own heart sunk to her feet. Knowing her barely one-year-old child would have to have such a risky surgery made her feel sick. But she knew James was a fighter, and their family could get through it together.
“You always think that your not going to be that parent, and then there comes a time, and you have to work through it.”
Jessica Devennie
Infantile Restrictive Cardiomyopathy
Cardiomyopathy occurs when the heart is unable to pump blood sufficiently, which frequently leads to heart failure. Restrictive Cardiomyopathy, or RCM, is a condition of cardiomyopathy where the heart is less flexible than normal, making it harder for the heart to expand and fill with blood between heartbeats. In James’s case, the right side of his heart was enlarged and the left side was normal, so the size and inflammation difference made it near impossible for the heart to properly circulate blood.
A pediatric cardiomyopathy diagnosis is extremely rare, especially a restrictive cardiomyopathy diagnosis. The odds of James being a child diagnosed with cardiomyopathy were only 1 in 100,000, and only 2.5-3% of pediatric cardiomyopathy cases were restrictive. It is so rare for an infant to have it that there are barely any statistics depicting the odds.
James’s New Heart
After James’s transplant, the family had to find a new normal. He was getting healthier fast, which meant a whole new life for the Devennie’s. A life involving parks and playdates, birthday parties and babysitters. Steven and Jess had spent the majority of their time being parents keeping James away from public places to prevent him from getting sicker. But now that he was healthy and growing up fast, they had to get over their fears and get outside!
Heart Transplants
All over the world, there are people who need heart transplants. In 2023 alone, over 6,000 people got transplants, not counting those who needed one and didn’t get it. Restrictive cardiomyopathy is one of the deadliest forms of cardiomyopathy, so in those cases, a transplant is even more crucial. Jess considers her family very lucky to have found a match and survived the transplant since not everyone is so lucky. As they spent time at the hospital, Jess got to know other families of children going through the same thing and had to watch as they lost their battles.
The Devennie Family Today
Today, almost three years post-transplant, James is thriving. Although he still has health troubles, he is a funny, athletic, and kind little kid who has a whole new life. He loves cars and paw patrol and has begun to play tee ball (or should I say win tee ball). To know James is to love him, and his family and friends are so grateful for the care he has received over the years. Jess hopes he can start preschool soon, and she’s even enrolled him in a daycare. She still has anxieties over letting him interact with new kids and places, but what mom doesn’t? The Devennie’s have moved to a new house and are ready to watch James grow and see who he turns out to be.
Why Is This Story Important?
Right now, there are over 100,000 people waiting for a transplant. Whether for a heart, a liver, or a kidney, for these people, a transplant is the difference between life and death. That’s why more people need to learn about organ donation and decide if becoming an organ donor is the right decision for them. I decided to be an organ donor when I first got my driver’s license at 16 years old, and I hope that when my time ends, I can help those on that list. Over the last few years of babysitting James, I’ve fallen in love with him, and I now know how vital it is to be an organ donor and support those who need a donation. My hope is that in sharing James’s story, more people will consider donations for children like James who need it.
Heart Mom by Caroline Mills
Citations
https://www.ahajournals.org/doi/10.1161/CIR.0000000000001151
https://www.mayoclinic.org/diseases-conditions/cardiomyopathy/symptoms-causes/syc-20370709