Bright Futures

When 2-year-old Harrison comes to Phoenix Children’s for his appointments, he doesn’t meet a stranger. Known for his joyful dancing and giggles, the toddler freely gives high-fives and hugs to the staff, as well as other patients.

“It’s like he sees these visits to Phoenix Children’s as social engagements,” said his mom, Beth.

Watching Harrison work a room, it’s hard to believe he survived a heart transplant in November 2021 – before he could even walk. Eager to make friends wherever he goes, Harrison spreads joy and positive energy to everyone he meets.

“If you saw our family at our local park, you wouldn’t know everything that Harrison has been through,” Beth noted. “He’s truly a heart warrior.”

From perfect health to heart failure

For the first year of his life, Harrison – born in September 2020 – seemed to be a typical, healthy baby. But just a few months shy of turning a year old, the toddler stopped gaining weight and had lingering cold symptoms. With a family vacation scheduled, Beth and her husband, Calvin, wanted to be cautious. They took Harrison to the doctor in July 2021, to rule out a serious illness like pneumonia. They were shocked when a chest X-ray revealed he had an enlarged cardiac silhouette (enlarged heart).

On Sept. 1, 2021, Harrison underwent a heart ultrasound, which showed that he was in heart failure. Harrison was admitted directly to the Cardiovascular Intensive Care Unit (CVICU) at Phoenix Children’s, where he was diagnosed with dilated cardiomyopathy, a condition in which the heart muscle becomes thin, and the lower left chamber of the heart stretches. That makes the heart unable to pump as effectively as it should.

“Harrison’s ejection fracture – the percentage of blood pumped out of his left ventricle and into his body – was at 20%, but normal would have been at least 60%,” Beth explained. “One of his cardiologists told us, ‘Imagine you're on the highway, and everyone else is driving 60 miles an hour while you're driving 20 miles an hour.’ That's what Harrison’s heart was doing.”

Waiting for a new heart

The cardiovascular team at Phoenix Children’s hoped that Harrison’s condition could be treated with medication. However, three weeks later, doctors told Beth and Calvin that Harrison would need a heart transplant. They said it could take up to six months for a suitable organ to become available.

“Harrison went back to Phoenix Children’s a day before his first birthday because he needed IV medications to keep his heart functioning,” said Beth, adding that testing showed Harrison has a gene mutation that increases his risk for cardiomyopathy and cardiac arrhythmias. “The medical team listed him for a transplant, and they let us know that we were going to be there for the long haul waiting for a heart to become available.”

From the doctor who often did the chicken dance with Harrison to the housekeeping team member who sang songs to him every day, Beth said the CVICU team made sure Harrison felt comfortable. He also was able to get out of his room, taking daily walks around the unit in a walker, waving at staff, other patients and their families.

“His heart rate was out of control, but personality-wise, he was doing just fine,” Beth said.

The Child Life team also provided support by playing with Harrison, allowing Beth and Calvin to take breaks when needed to manage family affairs, to care for their older son, Ellis, now 4, or to keep their mental health intact. One of the Child Life specialists even carried Harrison to the operating room for his transplant procedure.

“To know that he was with a friendly face during a scary time meant so much to me,” Beth shared.

A tiny heart: the perfect match

Beth was at a local garage, waiting for an oil change, when Phoenix Children’s transplant team called: a tiny heart was available, and it seemed to be a perfect match for Harrison. She was ecstatic, relieved and anxious.

The surgery took place the next morning, on Nov. 17. The six-hour procedure went well, and Harrison was sitting up in bed the day after surgery. His breathing tube also had been removed. About 10 days later, Harrison went home.

During the past year, Harrison has had regular biopsies to check for signs of organ rejection. So far, the results have been good. He also needed a feeding tube for about 14 months following surgery to help boost his weight. Beth said everything looked great at his one-year biopsy last November.

“There have been highs and lows since being discharged, but most of the time we are just enjoying spending time together as a family,” Beth said. “Since we’ve finally been able to take the feeding tube out, nobody can tell that anything ever happened to him. He gets to do normal things like other kids. He’s such a social person and tries to make friends everywhere he goes.”

“Forever a part of our family”

The celebration for Harrison’s new heart came with the bittersweet realization that another family lost a beloved child. Beth and Calvin are grateful and humbled, and they pray often for the family who gave Harrison the gift of life.

“I have cried so many tears for a family I've never met,” Beth shared. “As a mom, I cannot even imagine what it would feel like to make the decision they had to make, but we have our son because of their decision, so they're forever a part of our family. Their child lives on through our child.”

Beth also is grateful for the caring, compassionate team at Phoenix Children’s.

“We had such a good experience at Phoenix Children’s,” Beth remarked. “Not only did they take care of him medically, but they also saw him and our family as people. It was just the love and attention – and sometimes a hug – that we needed; they provided it. They gave care to the whole person.”