Mason Gaddy and Ella Floyd have stories that begin the same way: They were both babies born with severe heart problems. But their endings took two different paths – both connected to the life-saving power of organ donation.
While he was still in the womb, Mason was diagnosed with a rare heart condition called pulmonary atresia with intact ventricular septum. When he was born last December, his condition was complicated by coronary stenosis that obstructed blood flow to his heart.
Mason’s doctors at Levine Children’s Hospital concluded that surgical intervention wouldn’t be possible. His only chance for survival was a heart transplant.
It took about three months of waiting before a suitable heart was offered to Mason. “This was extremely lucky, because that’s about half the average wait time in the US,” says Gonzalo Wallis, MD, pediatric cardiologist and medical director of pediatric heart transplant at Sanger Heart & Vascular Institute.
During that time, Mason’s parents, Datione Gaddy and Visha Busby, spent countless hours by his side. “Everyone was telling me to leave the hospital, but every time I would leave I would wonder if the call would come today and I wasn’t there,” says Visha, Mason’s mother, who also had to care for Mason’s 6-year-old sister, Skyla.
When doctors informed Visha that a new heart was waiting for her son, the emotions were overwhelming. “I could barely breathe,” Visha says.
On the day before Valentine’s Day, a transplant team of about 10 specialists spent hours in surgery to give Mason a chance at the life his mother always wished for him.
The transplant was a success. Visha credits not only Mason’s doctors but her faith and family for bringing them through this journey. Now, almost three months later, Mason is growing, laughing and smiling – just like a normal 5-month-old.
Building a legacy for other families
Stephanie and Brian Floyd had the same hopes for their daughter, Ella, who was born this past February – just a week after Mason’s surgery. While Stephanie was still pregnant, Ella was diagnosed with a severely hypoplastic right ventricle and tricuspid valve. It wasn’t until she was born – and different tests could be run – that the true complexity of her condition was discovered.
Like Mason, Ella also had obstructed coronary arteries. When Dr. Wallis told Ella’s parents that she would also need a transplant, the Floyds were caught off guard. They had expected – just like Mason’s parents – that a series of surgeries could help their child without having to go through the risks of a transplant.
Though initially blindsided by the news, the Floyds quickly turned optimistic. Stephanie remembers the first time she was allowed to hold her daughter: “Ella looked so strong, and I just knew that she was going to be able to get through this upcoming journey,” Stephanie says.
Over the next three weeks, Stephanie and Brian spent most of their lives at LCH, caring for Ella while still making sure their 2-year-old son, Bane, always had the love he needed. Some days, Ella was perfectly stable. Other days, her condition went from bad to worse.
After 20 days, it was too late for Ella. The unimaginable had become real. A heart could not be found, and she died surrounded by her family.
“When a child is extremely sick, we always provide families with hope so they can continue to care for their child and have something to hold onto – while still being honest about their situations,” says Dr. Wallis. “When a heart doesn’t arrive, it’s a tremendous blow for everyone.”
At LCH, Dr. Wallis explains, successes are more common. The hospital leads the state in performing about 10 pediatric heart transplants a year. In 2017, LCH performed every pediatric heart transplant in North Carolina except one.
Despite their overwhelming loss, the Floyds are so grateful to the LCH team for the 20 days they gave them with their daughter. “We wouldn’t have had that much time with her without them,” says Stephanie. “We are thankful for their patience with us, and for everything they taught us.”
Now, the Floyds have turned their focus to telling Ella’s story and bringing awareness to congenital heart defects and the gift of organ donation. “All of those things you want for your child's life – you can make those happen for another family when they are unfortunately not able to happen for yours,” says Brian.
And there are many families out there like the Floyds. In 2017, more than 1,800 children received transplants in the US. Yet currently, there are nearly 2,000 children under the age of 18 waiting for a transplant, with 500 of those under the age of 5. Most children under the age of 1 who need a transplant are waiting for a liver or heart.
According to Dr. Wallis, one pediatric donor can save as many as 10 lives by providing multiple organs, including the cornea, lungs, liver, intestine or kidneys.
To learn more about organ donation, visit DonateLife.net. For families ready to register their decision to help their child save others, visit RegisterMe.org.
