New year, new heart for baby Wesley
A baby’s ‘heart attack’ leads to transplant at UI Health Care Stead Family Children’s Hospital
It’s funny what we remember about life’s biggest moments.
Julia Peterson remembers a cardiology nurse clacking away at a computer keyboard just outside the hospital room of her 8-month-old son, Wesley.
Having been at Stead Family Children’s Hospital for nearly four months for Wesley’s failing heart, Julia knew the daily routine. And this nurse didn’t usually come to the pediatric intensive care unit in the mornings. As Wesley lay in bed with a special pump to keep his heart beating, she saw several members of his care team gathering outside his room. His doctors, his surgeon, and others all talked quickly and quietly with one another. Julia wondered what could be happening, and then, as if summoned to answer her curiosity, they entered the room.
“Dr. Beasley, our cardiologist, steps forward and he says, ‘I think we have a solution to the issues we’ve been having,’” Julia recalls. “‘We’ll just get rid of the pump entirely,’ he says, and I was just really confused.”
Her confusion quickly turned into renewed hope and relief. Pediatric cardiologist Gary Beasley, MD, told the first-time mom the news she’d been waiting weeks for.
Baby Wesley was getting a new heart.
A ‘heart attack’ at 4-months-old
Julia and her husband, Spencer, noticed Wesley getting fussy, sickly, and developing a rash that wouldn’t seem to go away. The parents chalked it up to normal baby issues. Then, on a trip to Utah to visit family, Julia saw the ends of Wesley’s fingers turning purple.
“That was the moment we knew he needed to be seen,” says Spencer, who was still in Iowa at the time for a clinical rotation as part of his medical training with the university’s Carver College of Medicine.
According to Julia, doctors in Salt Lake City found aneurysms “everywhere” in the 4-month-old’s body. After a lot of tests, Wesley began treatment for polyarteritis nodosa (PAN), a rare autoimmune disease that causes inflammation and damage to the heart. Knowing the family needed to go back to Iowa, the Utah hospital and Stead Family Children’s Hospital started talking with one another.
“We had appointments all lined up for him to come and start seeing specialists here,” Julia says. “We had an appointment set up with Dr. Khan the day after we got back.”
Cardiologist Rabia Khan, MD, and Beasley make up two-thirds of the providers on the heart failure team at the children’s hospital along with Michelle Staron-Ehlinger, MMS, PA-C. Unfortunately, Wesley didn’t actually meet the team at their first appointment, rather they met the baby in the emergency room where Wesley showed profound heart failure.
“PAN essentially caused him to have enlargement of his coronary arteries that he then developed clots inside of,” says Beasley. “For someone as young as him, he was essentially having a heart attack.”
Care team makes a tough call
Wesley’s heart function continued to falter as the medical team rushed to find answers.
“He had a lot happen those first few days. His heart was stopping, and they had to start doing CPR to keep his heart going. They did CPR for 30 minutes and in those 30 minutes were able to get ECMO started,” says Spencer.
Extracorporeal membrane oxygenation (ECMO) is a life support therapy that lets the heart and lungs rest. While it kept him alive, Wesley’s heart function didn’t improve.
As nothing else seemed to work, the care team made the tough call to recommend a ventricular assist device, commonly called a VAD. With all its wires and tubes, the device keeps the blood pumping through the body. Usually, a VAD is only surgically connected to the left side of the heart, but Wesley’s heart had other needs.
“We tried in the operating room to see how his heart functioned while we had the VAD on just the left side, but it was determined that his right side was struggling as well,” says Staron-Ehlinger.
Unlike adults and adolescents, smaller children on a VAD typically can’t leave the hospital as the intricate device needs constant monitoring to prevent additional clots, infection, and other issues. It’s often a temporary solution while the care team looks for a more permanent solution.
For Wesley, that meant going on the list for a heart transplant.
‘Transplant is a team sport’
A week after his heart transplant surgery, 8-month-old Wesley entertains his parents and care team with a huge smile. Standing next to his bed is Yuki Nakamura, MD, pediatric cardiothoracic surgeon. As Wesley coos and giggles in his mother’s arms, Nakamura breaks into a smile of his own.
“This is proof of the great work that our team does,” he says.
Nakamura performed both the procedure that placed the VAD on both sides of Wesley’s heart as well as the boy’s transplant surgery that lasted close to 12 hours.
“PAN affects blood vessels everywhere. So, his vessels were very, very fragile,” says Nakamura. “This made the transplant surgery more challenging. I had to do very meticulous suturing just because of the damage to the arteries.”
Thankfully, Nakamura’s work was a success, and Wesley’s new heart continues to function properly.
“Transplant is a team sport,” says Beasley. “From the heart failure team to the surgeons to the PICU team to dietitians to physical therapists. We can’t do this without a robust team.”
For Spencer, the experience has reaffirmed his choice of Iowa for training and to work in pediatrics.
“It’s been an interesting perspective for me to see it from the other side as well, as the parent, especially in somebody who's got so many chronic problems now,” says Spencer, who recently started his third year of medical school. “We've been here for a while now and I want to stay here for residency too, so I'm hoping we get to be here for a while.”
Wesley's future
Like with any transplant, Wesley will receive follow-up care for the rest of his life to monitor his heart and its ability to function normally.
“We have to make sure that we do things at his pace and watch for early complications,” says Khan. “We know that patients transplanted in infancy do well, primarily due to the immature immune system being more accepting of a new heart.”
Thankfully, Wesley came out of this ordeal with no neurological deficits, a concern for anyone experiencing prolonged CPR and ECMO.
“He'll be on medication for the rest of his life, but most of our heart transplant kids live very normal lives,” says Staron-Ehlinger. “These kids go to school, they're playing sports, they're in extracurricular activities. So, that's what we foresee for him.”
For Julia and Spencer, they’re hopeful for the future while focusing on the now. Due to all of Wesley’s treatment, the VAD, and the surgery, neither parent had held Wesley chest to chest since he came to the children’s hospital months ago. A week after the transplant, Wesley became fussy, so Julia checked the guidelines for post-surgery, and found that she could hold him against her, feeling his heartbeat against hers once again.
“That was just so special after so long. I've held him in different ways but just holding him chest to chest and just giving him a normal hug, it was very special,” says Julia.
“We weren't sure if we were going to see his smile again,” says Spencer. “To see him smiling and growing, we're just looking forward for him to be able to do all the normal kid things.
As he enters 2025 with a healthy, functioning heart, baby Wesley’s future is as bright as his smile.
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