At the Bedside: How a tiny patient and a determined care team delayed a heart transplant

From left, Avichal Aggarwal, MD, and Henry Peel. (Photo by Kelly Jensen)

Kelly Jensen went in for her 20-week ultrasound, nervous but excited to see her baby boy's progress. When the ultrasound tech suddenly left to get the doctor, Kelly knew something was wrong.

“They sent us to a UTHealth Houston cardiologist because they couldn’t tell us what was wrong with our son,” she said. “When we finally got a diagnosis, we were in doctors' offices every week, researching, and making sure we were prepared for what we were about to get into.”

Henry was diagnosed with hypoplastic left heart syndrome, a severe congenital heart defect where the left side of the heart is critically underdeveloped and cannot effectively pump blood throughout the body. 

After receiving the diagnosis, Kelly and her unborn son were closely monitored by a team of physicians at UTHealth Houston who put a special plan in place for her delivery. 

Henry Peel was born on July 2, 2024. 

“I got to hold him for a bit before the NICU team took him away. It was terrifying, but I knew he was in good hands,” she said.

Three days after his birth, Henry underwent a Norwood procedure in the care of UTHealth Houston Children’s Heart Institute, the first of three open-heart surgeries Henry would have to undergo before his fifth birthday. The Norwood procedure reconstructs the heart’s circulation, allowing the right ventricle to pump blood throughout the body. Doctors also add a small tube to allow blood flow to the lungs. 

Henry finally went home, but he had to return to the hospital just five months later for his second open heart surgery, the bidirectional Glenn procedure. This procedure is a follow-up to the Norwood procedure, in which doctors disconnect the superior vena cava, the large vein that brings deoxygenated blood from the upper body, and connect it directly to the pulmonary arteries. This creates a direct line of blood flow to the lungs without any extra workload from the heart. 

The surgeries went well. Henry was more active than ever until a few months later, when Kelly's motherly intuition told her something was wrong.

“He was breathing heavily, he wanted to drink water all the time, and he didn’t want to do anything, he just laid there and cried and cried,” she said. “We had an appointment, and that’s when we found out his condition had taken another turn for the worse, but they wouldn’t tell us how bad.”

They met with Avichal Aggarwal, MD, associate professor of pediatrics at McGovern Medical School at UTHealth Houston and pediatric cardiologist at UT Physicians, and found out Henry was in severe heart failure and needed a new heart.

“Instead of having four valves, he has two valves, and one of them, the tricuspid valve, was leaking severely, and his only ventricle was failing and was not able to pump blood effectively,” Aggarwal said. “So I told the family what their options were: We could put in a mechanical heart while waiting for a transplant, or we could try at-home milrinone treatment.”.

For Henry, a mechanical heart transplant would only be a temporary solution until he received a donor heart. A heart transplant at his age would only last him 10 years.

Aggarwal started offering Milrinone as an option to patients in the Pediatric Advanced Heart Failure program at UTHealth Houston five years ago and has seen more than 80% success in the recovery of patients’ heart function. Milrinone is an intravenous drug given to heart failure patients to strengthen heart contractions and relax and widen blood vessels. 

“We wanted to put off a heart transplant for as long as possible, and there weren’t many options left,” Kelly said. “I was also pregnant with our second child and worried about being in the hospital for a long time while Henry was recovering, not being able to be with him the whole time. So we decided the medication was the best option for us.” 

Henry started milrinone in June last year, but Kelly worried when his heart function suddenly dropped from 20% to 12%. She trusted Aggarwal and his team that the medication would work and knew that Henry would get worse before he got better. One month later, Henry’s heart function tripled, he began eating more, and getting more active. Doctors attached a permanent line for the medication, and he was finally able to go home and be with his new baby sister.

By January 2025, Henry was taken off the treatment with almost normal heart function and an age-appropriate activity level. One day, Henry will need a transplant, but for now, he is finally enjoying life as a typical 2-year-old.