Jackson's Story

Jackson Bell just celebrated his eighth birthday following a recent heart transplant at MUSC Shawn Jenkins Children's Hospital (SJCH). Jackson has a diagnosis of hypoplastic left heart syndrome (HLHS), a congenital heart defect in which the left side of the heart is so severely underdeveloped that it does not function.

Diagnosis and early treatment

Jackson's parents learned of his diagnosis prenatally, early in the second trimester. Children with HLHS require a series of three open-heart surgeries that essentially reroute the blood flow so the right side of the heart can do all the work – a procedure called staged palliation.

 

Jackson had his first open-heart surgery at only 8 days old, his second at 5 months old, and his third at 4 years old.

The procedure appeared to resolve Jackson's heart problems. In mid to late 2022, however, he began exhibiting concerning symptoms and underwent a catheterization that revealed a decline in heart function.

Jackson was in heart failure and would need a new heart.

The family hoped medications would help delay the need for transplantation.

"Unfortunately, the medications did not work as well as we had hoped," said Kristin, Jackson's mom. "Jackson's heart function continued to worsen. His endurance declined, he was often short of breath and he suffered from fatigue."

The gift of a new heart

Jackson was officially placed on a transplant list on February 3, 2023, and admitted to SJCH seven weeks later. Once admitted, he was continuously administered IV medication to treat his heart failure until he could undergo a heart transplant.

Almost 14 months later, on May 14, 2024, Jackson received the gift of a new heart.

"We were so thrilled to learn that Dr. Kavarana, the same surgeon who performed Jackson's three open-heart surgeries, would also perform his heart transplant," said Kristin.

Jackson was discharged from the hospital only two weeks after his surgery!

When care teams become family

With such a long stay, Jackson and his family got to know the SJCH staff well.

"We are so thankful for the entire team at SJCH," said Kristin. "The doctors, nurses, therapists, Child Life team, social workers, cafeteria staff and even the hospital security guards were incredible in ensuring that not only Jackson, but also our entire family was taken care of."

Some of Jackson's favorite parts of his stay at SJCH were the therapy dogs coming to visit. He especially grew fond of Baskin, Baby and Peggy during his stay, as well as their owners.

Jackson's family also expressed immense gratitude for the Emerson Rose Heart Foundation (ERHF), a major donor to SJCH, as they provided the family with support and love throughout their stay.

Life after transplant

Now that Jackson and his family have returned home, Jackson is able to live a relatively normal life.

"Unless he showed his scar, you'd never know that he has been so sick," said Kristin. "He has returned to school and has no limitations other than participating in contact sports."