A true heart of gold: Jeremiah’s heart transplant journey

Jeremiah holds his hands in front of his chest, making a heart shape with his fingers.
Jeremiah's journey to a heart transplant has been a long one, but his family never stopped believing in him. (Photos: Michael Goderre/Boston Children's Hospital)

With sirens wailing, Angelie and her husband sped through traffic, anxious to get to the city in time. The police escort ahead of them cleared the way, allowing for a speedy commute to Boston Children’s Hospital where their 6-year-old son, Jeremiah — nicknamed JJ — was waiting for them. If Angelie hadn’t waved down the police car just miles before, they never would have made it in time. “The traffic that day was crazy, we weren’t moving, and that’s when I saw the police car on the side of the highway,” explains Angelie. “I explained the situation to them, and they immediately knew that we needed to get to hospital, no matter what.” 

Before this high-stress car ride, Angelie and JJ were no strangers to hospitals and health scares. As a young mother, Angelie learned while pregnant with Jeremiah that he would be born with a complex congenital heart defect. Her doctors in Southeastern Massachusetts suggested that Jeremiah’s quality of life would not be sufficient and would lead to a lot of challenges as he grew older. Angelie had full faith that her son would grow up strong, so her doctor transferred her care to Boston Children’s.  

When he was born, JJ was taken to the Cardiac Intensive Care Unit (CICU) at Boston Children’s and was scheduled to have open heart surgery a week later. After that first surgery, JJ stayed at the hospital for 10 months. Three open heart surgeries later, he was able to stay home for almost two years until he was due for the next one.   

Believing never stops  

After his fourth open-heart surgery in August 2018, his care team, led by Dr. Christopher Baird and Dr. Paul Esteso, realized that something wasn’t right — Jeremiah was experiencing a lot of internal bleeding and would need emergency surgery. During the procedure, the team discovered that JJ’s heart was still not functioning properly, and JJ was experiencing intense blood clotting and lack of oxygen, causing his hands and feet to turn black.  

The surgical team decided that he would stay at the hospital on extracorporeal membrane oxygenation (ECMO), an advanced technology that temporarily supports heart and lung function, which gave JJ’s lungs time to grow and allow him to recover from surgery. 

Once he was responding well to ECMO and was cleared to be removed from that treatment, Angelie was getting ready to find a rehabilitation center for JJ to continue to recover at. However, she and JJ’s doctors were shocked when he began running around his hospital room, laughing and playing. “They took one look at him, and we all agreed that he wouldn’t need rehab care in a facility,” remembers Angelie. “So, with the doctor’s approval, we were able to take him home.” For almost three years, he was able to stay out of the hospital for any major procedures.  

Jeremiah has one foot up and a fist in the air in a super-hero pose.
One-year post-operation, Jeremiah’s favorite things to do are hang out with his sisters and play music for his local church.

Moving mountains — and traffic 

In January 2020, after JJ was rushed to the hospital with a dangerously high heart rate, his care team told Angelie that a heart transplant would be best for his quality of life. She and her husband agreed, and JJ was placed on the national wait list to find a match.  

One day, in August 2022, Angelie and her husband were at home when both of their cellphones were ringing nonstop. “Dr. Esteso was calling us, telling us that there was a match for Jeremiah to receive his heart transplant,” shares Angelie.

With only a two-hour window to get to the hospital — and living an hour away — she and her husband got in the car as fast as they could. Thanks to the police officer she waved down, they arrived at the hospital in record time and Jeremiah was able to have a successful heart transplant. “We never gave up hope, and the team at Boston Children’s was right there with us, never stopping until Jeremiah was healthy.”  

Now, 7-year-old Jeremiah is one-year post-heart transplant and is on an anti-rejection oral medication system to make sure that his body stays strong. When he isn’t being a protective older brother to his younger sisters, he’s playing with his drum set at his local church — which were gifted to him by the police officer who escorted his parents to the hospital.

For more, visit the Benderson Family Heart Center and the Pediatric Transplant Center.

Share this: