New year, new life
Noah English, 4, thriving after heart transplant
By Rebecca Burton
Noah English had been waiting 576 days when his new heart arrived on Dec. 31. It was just two days before his 4th birthday.
“The transplant itself went amazingly well,” said Mark Bleiweis, M.D., principal cardiothoracic surgeon and director for the UF Health Congenital Heart Center. “He’s doing things now that he couldn’t do before. It’s a miraculous turnaround.”
Noah had spent most of his life in the hospital. Born with a severe congenital heart defect called hypoplastic left heart syndrome, or HLHS, he lived for 18 months waiting for a heart transplant in the pediatric intensive care unit at UF Health Shands Children’s Hospital.
It wasn’t easy for Noah’s mother, Kristina Cunningham, to take care of him and his older brother, Halend, and to manage life away from her home in Port Orange, Fla. But she took comfort knowing Noah’s care team was watching out for him.
“Everybody took care of him and his nurses became family to us,” Cunningham said. “It wasn’t a normal life, but it wasn’t terrible. I can’t complain.”
An average of 1 in 100 babies is born with a congenital heart defect. It is the most common type of birth defect, and the leading cause of birth-defect-related deaths among children younger than 1.
In hypoplastic left heart syndrome, the heart’s left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped. Children born with HLHS typically go through three surgeries, sometimes followed by a heart transplant later in life. The first stage is called the Norwood procedure, in which the heart is rebuilt to help the newborn’s single pumping chamber support the body, while supplying blood flow to the lungs through a small plastic shunt or tube. The second procedure, called the Glenn, is done when the baby is 4 to 6 months old. This surgery helps the heart pump blood to the lungs, but still doesn’t separate oxygenated and deoxygenated blood. When the child is 4 to 5 years old, they typically undergo a third and final surgery called the Fontan. This procedure allows almost all the blue blood coming back from the body to go to the lungs. Since nearly all the blood pumped out to the body goes through the lungs first, children are pinker than they were before the surgery.
But the third surgery would not have worked for Noah.
“His heart function wasn’t as good as other kids,” said Gonzalo Wallis, M.D., a pediatric/ transplant cardiologist with the UF Health Congenital Heart Center. “The valve that separates the top chamber and the bottom chamber was very leaky. If you have that, then your third surgery doesn’t go well.”
Noah needed a heart transplant. The waiting time for a heart transplant varies, but Noah’s 18-month wait was long by any measure.
Cunningham said UF Health Shands Children’s Hospital became their second home, celebrating holidays and birthdays in the pediatric intensive care unit.
“She was incredibly patient through all the issues related to chronic hospitalization,” said F. Jay Fricker, a professor and chief of pediatric cardiology in the UF College of Medicine. “I think it was always hard to go in the room every day and say, ‘Hang in there, we’ll get a good heart for Noah.’ I think that’s all we could do. It was such an unpredictable situation.”
For Noah and other heart transplant patients, the goal is to live as normal a life as possible. Fricker said the survival rate for pediatric heart-transplant recipients has improved since they were first performed in the United States in 1984. Although Noah’s medication puts him at a higher risk for cancer, his long-term prognosis is good.
“It’s obviously not perfect,” Fricker said. “But I think from just the fact that he feels physically well has made a major difference in his overall motor development.”
Noah is behind developmentally in language and social interaction, but Cunningham said he has vastly improved since receiving his new heart.
Before his transplant, Noah wasn’t allowed to go outside, and a common cold could be detrimental. Since the transplant, he has started walking, talking with family, and plays with Halend. Cunningham said if she has trouble teaching Noah something new, Halend does it with ease.
“Now it’s normal life, I guess you could say,” Cunningham said. “We have restrictions and down the road we will need another heart, but hopefully that won’t be for a very long time. He’s living.”
Cunningham and Noah have returned home to Port Orange and are falling into a normal routine. Noah starts physical, speech and occupational therapy soon. In the hospital, he started preschool, and soon he’ll begin homeschooling, picking up where he left off.
Cunningham hopes to return to work as a nurse in the fall, but right now, she is enjoying time with her boys. She credits Noah’s life to the dedicated team at UF Health. She assigned Fricker the nickname “Father Fricker” because he was the only doctor who could keep her calm during stressful times.
“I just love that man. He really cares about his patients,” Cunningham said. “To him, it’s not just a job.”
Noah’s success is a testimony to the teamwork of the UF Health staff, Bleiweis said.
“When you’re dealing with children and adults with congenital heart disease, transplantation is one of those areas that epitomizes the need for the word team,” Bleiweis said. “We rely on each other; that’s why I’m at UF Health — because I believe so much in the people here. Our team worked so well to get Noah through a very long course.”