By Thomas Smith
Grace, Emery, and Mya are three inspiring and courageous girls in metro Atlanta who share a unique bond as a result of a stressful, scary, and life-changing experience they endured within the last seven years. They all became heart transplant recipients during that time. After hearing the terrifying seven words “We need to get you a new heart,” the three girls, their families, friends, and support networks endured a lengthy and extreme rollercoaster ride of highs and lows. And it is something they never want to go through again.
Grace was diagnosed with a dilated cardiomyopathy (an enlarged heart) at 11 days old. Despite a very weak heart, she compensated well for many years with the help of medications. But as time went on, her symptoms worsened. She was placed on the list for a heart transplant on January 22, 2010. On April 4, 2010, she received the gift of a new heart. At 14, Grace is now in high school and thriving in and out of the classroom.
Emery was born with hypoplastic left heart syndrome (HLHS). Her parents, Keely and Phillip, received the diagnosis about 23 weeks into their pregnancy. The couple knew Emery would be facing multiple open-heart surgeries, and possibly a heart transplant early on in life. Emery endured two of three staged open heart surgeries, but her right ventricle was not functioning well, and she was assessed for a transplant. At 19 months old, Emery was put on the transplant waiting list.
Her family considered themselves lucky to have her at home, and expected the wait for a new heart to last for months. They were shocked to receive a call the next morning after she was added to a list, stating that a heart became available for Emery. Unfortunately, the donor heart was not a perfect match, and Emery experienced rejection upon receiving the organ. She was treated in intensive care for three weeks, to strip her body of as many antibodies as possible to stop the rejection. During her three-week battle, Emery was very sick, and the treatment she received was very new. Although she was able to go home after a month, the year following transplant was the hardest and most challenging—trying to manage her anti-rejection medication, which caused serious side effects and a lot of stress.
Once her anti-rejection meds were tapered back, Emery began to thrive. She had five good years with her heart, surrounded by family and friends. Emery’s condition slowly deteriorated in the summer of 2015, and she passed away in September while waiting for her second transplant heart. Her family remains grateful to the donor family and for the medical advancements made in order to give Emery an extension on her life. Now they are working hard to preserve her memory by establishing a Foundation in her memory with proceeds going to Children’s Healthcare of Atlanta and other organizations hoping to wipe out pediatric heart disease.
It was during a family spring break trip to Disney World in the spring of 2010, when the trajectory of Patrick and Madelyn’s life changed forever. Their youngest daughter Mya, only 15 months old, went into heart failure and was diagnosed with dilated cardiomyopathy. She lived well for nearly two years until the morning of her birthday when she began to exhibit signs of heart failure. Her parents took her to the hospital, and it was at that point that she was placed on the transplant list as with a designation of “status 1A” (most urgent). She patiently waited in the hospital for six months until she got word that a heard was found. Mya went home five days after the procedure, and hasn’t missed a beat ever since while enjoying activities such as swimming, gymnastics, her dogs, and family. She’s now in the first few months of her third grade year.
Mya’s parents learned early on in their journey that very little was done being done in regards to pediatric heart transplant research, and they wanted to make a difference. After thoughtful consideration and planning, they launched the nonprofit Enduring Hearts in 2013 with a three-pronged mission: fund research that increases the longevity of pediatric heart transplants, improve the quality of life for transplant recipients, and eliminate pediatric heart disease.
As a result of their collective vision, leadership, and fundraising efforts, more than $2.5 million has been raised to date. Most importantly, progress is being made as research projects led by new technologies and treatments are now underway at a dozen institutions across the world, including Children’s Healthcare of Atlanta, Emory University, Duke University, Vanderbilt University, University of Toronto, and Calgary University. Additionally, grant-making alignments have been established with the American Heart Association and International Society of Heart & Lung Transplantation. The results of funded research projects are contributing to the clinical and scientific knowledge about many important aspects of organ transplantation, e.g. the mechanisms of long-term organ deterioration, the consequences of tissue injury, and opportunities to intervene, postpone, and eliminate rejection processes.
The extraordinary display of strength combined with a positive attitude from these three girls and their families is something to both admire and cheer. Their hope is that significant advances are made, so that some day not only will repeat heart transplants not be necessary, but pediatric heart disease will be eradicated all together. To that end, Enduring Hearts is leading a campaign to raise $100 million in the coming years to make this a reality. And Patrick and Madelyn, Grace’s parents Audrey and Doug, and Emery’s parents Keely and Philip, are all joined together in this mission.
“We recognize that the extraordinary gift each day represents in all of our lives because of Mya’s heart transplant,” said Patrick. “And we fully intend to see the day when a child can receive a heart transplant and live with the same heart for the rest of his or her lifetime.”
Unless you are directly connected to the field of transplantation, most people don’t fully comprehend how fragile life can be for a heart transplant recipient. A little more than a quarter of all heart transplant recipients need a second one five years after they have gotten that first heart. The survival rate for is 71.5 percent for primary heart transplant recipients and the survivor rate for repeat heart transplant recipients drops to 57.8 percent. Additionally, a 2016 report revealed that there are more than 4,200 pediatric patients awaiting a heart transplant, with 134 of them needing a repeat transplant. Overall, 132,000 individuals are waiting for a vital organ transplant, with nearly 16,000 of those needing a repeat transplant.
For more information and to learn about ways to get involved and contribute, please visit the Enduring Hearts website.