Pulmonary Atresia: Levi's Story
Patient Story Highlights
- Levi was born with a rare birth defect called pulmonary atresia.
- When he was only a few weeks old, Levi had a heart transplant at the Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida.
- Levi developed a type of cancer that organ transplant patients are at risk for due to the immunosuppression medications they take to prevent organ rejection. He was successfully treated with chemotherapy and immunotherapy.
- Despite Levi’s diagnoses, he is a happy child with multiple interests that include riding his bike, dancing, cooking, pretending he’s a doctor and learning.
Dubbed “the mayor” for his outgoing personality and winning ways, Levi, 7, has spent more time in the hospital than many people do in a lifetime. While you might think that experience would lead to a dislike of medical facilities, in Levi’s case it’s just the opposite.
“He loves Johns Hopkins All Children’s Hospital,” says his mom, Anna. “Whenever we drive past it, he proudly says, ‘There’s my hospital!’ Everyone he interacts with there is so cheerful and positive. They treat him like a celebrity.”
A Difficult Start
Levi was born with a rare birth defect called pulmonary atresia. With this condition, the valve that regulates blood flow from the heart to the lungs doesn’t form. He also had a small right heart ventricle with abnormal coronary arteries.
When he was only a few weeks old, Levi had a heart transplant at the Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida, along with a plasma exchange procedure to rid his body of any antibodies that would work against the new heart. The transplant itself was a success, but more challenges soon followed.
“Levi developed a type of cancer that organ transplant patients are at risk for due to the immunosuppression medications they take to prevent organ rejection,” says Alfred Asante-Korang, M.D., director of the Heart Transplant and Heart Failure Program at Johns Hopkins All Children’s, who leads the transplant team and continues to treat Levi. “He was successfully treated with chemotherapy and immunotherapy.”
But that wasn’t all. Levi was also diagnosed with failure to thrive, meaning he was unable to take in enough calories to grow and gain weight as he should. To help, a G-tube was inserted through his belly to allow nutrition to feed directly into his stomach.
As Levi got older, he was diagnosed with osteopenia, which causes loss of bone mass. More recently, doctors began also treating Levi for Noonan syndrome, a genetic condition he was diagnosed with as an infant that causes developmental problems.
Communicating Across the Board
Levi’s complex medical needs require care involving multiple specialists at Johns Hopkins All Children’s who collaborate smoothly with one another and are always available to answer questions from Anna and her husband, Greg.
“All of those involved in Levi’s care trust one another,” Anna says. “They are a true team.”
“Our specialists are dedicated to working together to treat patients with complex medical issues,” Asante-Korang agrees. “Levi is fortunate to be cared for in a place where all the specialized services he needs are available in a single institution.”
For example, when Levi was diagnosed with osteopenia, endocrinology specialists became involved right away to understand his growth issues, and because Noonan’s can lead to blood disorders, geneticists and hematologists joined the team.
Anna and Greg have another son, 3-year-old Carter, who is also a patient at Johns Hopkins All Children’s.
“Carter’s care is less complex, but it has also been wonderful,” Anna says. “Our experience with Levi gave us confidence that Carter would be equally well cared for.”
Despite Levi’s diagnoses, he is a happy child with multiple interests that include riding his bike, dancing, cooking, pretending he’s a doctor and learning.
A first grader who attends school virtually, he offers to help his classmates and, despite difficulties with speech, enjoys reading aloud.
“He has a beautiful spirit,” Anna says.
Anna believes one source of his confidence has been her son’s experience at Johns Hopkins All Children’s.
“One reason he’s not self-conscious about speaking is that the hospital staff doesn’t even blink when they talk with him,” she says. “He feels so comfortable when he’s there that he runs up to give everyone he sees a hug right away.”
No matter what happens, Levi remains happy.
“The most rewarding part of caring for a patient like Levi is the fact that this brave little guy always arrives with a big smile on his face,” Asante-Korang says. “He has had a major heart transplant, cancer treatment and many other challenges, but he takes everything in stride.”
Anna and Greg remain thankful that they can count on the team at Johns Hopkins All Children’s.
“They put the life of our child, not his medical condition, first,” Anna says. “We are so fortunate they are part of our lives.”