It’s been two years since her heart transplant, and Ella Kate is happy and loving life. Since the moment the now three-year-old was born, she’s had to fight for her life. Ella Kate didn’t breathe for eight minutes when she first entered this world and was immediately airlifted to Atrium Health’s Levine Children’s Hospital in Charlotte. Hours later, her parents learned their newborn daughter might not survive because of tumors found throughout her tiny, walnut-sized heart.
But the feisty little girl did survive – and a team of doctors began a challenging, months-long journey to keep Ella Kate alive. It took weeks of collaborative work to rule out cancer. When the hospital’s cancer, heart and intensive care teams learned her tumors were benign, focus shifted to treating Ella Kate’s failing heart. In the months that followed, Ella Kate’s health continued to wane and doctors agreed a heart transplant was the little girl’s only hope of survival – even though there was a chance her body could reject the donor organ.
A Life-Saving First for Levine Children’s Hospital
Ella Kate’s doctor, Gonzalo Wallis, MD, a pediatric cardiologist and director of the heart failure program at Levine Children’s Hospital, says a lot of doctors were invested in this rare case. “I’ve known Ella Kate since birth and I worried about her for a very long time,” says Dr. Wallis.
In the U.S., about 450 pediatric heart transplants take place each year and only 10 percent of children 2 and younger are ABO-incompatible, which means they can accept organs from all blood types. Ella Kate was fortunate to be among that 10%, and this opened the door for doctors to perform the first pediatric ABO-incompatible heart transplant surgery in Levine Children’s Hospital history.
Fast forward to today and 3-year-old Ella Kate is doing well, thanks in part to a policy change by the United Network for Organ Sharing (UNOS), which makes it easier for newborn patients who can accept ABO-incompatible hearts to get life-saving organs. “Organs are not that readily available and the UNOS policy change increases the number of organs available to younger kids, who tend to be the ones who wait the longest,” says Dr. Wallis. “People used to think you could only receive your own blood type or O blood type and if you crossed the lines, the heart would not work immediately. But that’s not always true. So, when Ella Kate started to get sicker, and we decided she was not a good candidate for a mechanical heart, we knew the ABO-incompatible heart transplant was our best shot.”
The Path to Transplant
Ella Kate was added to a transplant waiting list on November 29, 2016. “We enjoyed Christmas at home, but were very ready for her new heart,” says Melanie Leitner, Ella Kate’s mom. “Then, one Sunday morning at church, the pastor asked the congregation to pray for us because she was not doing well. We were so nervous her heart was going to fail – we just wanted to make every moment count.”
On the way home, the Leitners got the phone call they’d been waiting for: A heart had become available. The organ wasn’t a match for patients at four other hospitals, so Ella Kate got her chance. “We grabbed our bags and headed to the hospital to start all the pre-transplant work,” says Leitner. “We have a big family and when Ella Kate went into surgery, we had 28 people in the waiting room with us.”
Earlier that same day, Rev. David Carl, executive director of spiritual care and education at Atrium Health, performed a ceremony to bless MedCenter Air’s newest aircraft, a 30-year tradition. Little did anyone know, the plane’s first flight would be to help deliver the first ABO-incompatible heart to Levine Children’s Hospital.
Complex Challenges, Life-Changing Results
The ABO-incompatible heart transplant surgery was a first for Thomas Maxey, MD, a pediatric cardiovascular surgeon at Levine Children’s Hospital and Atrium Health's Sanger Heart & Vascular Institute. “A transplant typically has a lot of moving parts – this had a lot of moving parts on steroids,” says Dr. Maxey. “Tumors of the heart are extremely rare in children, and because we had the challenge of working with different blood types, Ella Kate’s transplant involved a lot more checks and balances, and extra steps, than a traditional heart transplant.”
Dr. Wallis personally delivered blood samples to the screening lab one floor below to test if Ella Kate’s blood would accept or reject the donor heart, says Dr. Maxey. He made several trips, and even took the stairs to save time. “The anxiety really hit me when we allowed blood to go back in the heart,” says Dr. Maxey. “I was more nervous at that point than I’ve ever been during other transplants. If her body rejected it, we’d have lost her. Thankfully, her heart function was excellent and she was out of the pediatric cardiovascular intensive care unit in a couple of days.”
Holding a Baby Angel
Today, Ella Kate is home and thriving. She's even a big sister to twin brothers! “From the time Ella Kate was born until her transplant, we had been told many times she might not survive,” says Leitner. “We got a small glimpse of what the pain of losing a child would be like. So, in honor of the donor family, I promised myself that when I hold my little girl, I’ll squeeze her extra tight because I’m holding their angel baby too.”
