A young life saved by the gift of a dual organ transplant
By Christina Orlovsky
In July 2021, Nehemiah “Nemo” Maldonado was a healthy, active 12-year-old playing with friends and family in his home state of Arizona. Weeks later, he was fighting for his life, facing an illness that came on suddenly and progressed rapidly. Within months, he would become the first patient at Rady Children’s Hospital to receive a dual organ transplant.
“He was always a healthy kid—nothing was wrong with him,” recalls Nemo’s mother, Mary Lopez. “Then one day he wasn’t feeling well. We thought it was just a stomach flu because he couldn’t keep anything down. We tried to keep him hydrated and we took him to urgent care, but they sent us home.”
A week later, Nemo still wasn’t feeling well. His parents took him to see his pediatrician, who quickly realized that something was very wrong.
“As soon as she listened to his heart, she told us to go straight to the emergency room,” says Lopez, who adds that they also noticed Nemo’s feet were swelling. “It all happened so fast—it was just one thing after another.”
After specialists looked at Nemo’s echocardiogram in the family’s local children’s hospital, they admitted him to the intensive care unit. Nemo’s condition continued to worsen, and within four days, he was placed on extracorporeal membrane oxygenation, a process that pumps blood to a heart-lung machine that removes carbon dioxide and adds oxygen before returning it to the body.
Within hours of being placed on the machine, Nemo was transported by air from Arizona to Rady Children’s to receive care from John Nigro, MD, a cardiothoracic and heart transplant surgeon, chief of cardiac surgery, director of cardiac transplantation and the mechanical assist program, and director of the Rady Children’s Heart Institute.
“The cardiologist in Tucson had worked with Dr. Nigro and recommended we come here,” Lopez explains.
The Rady Children’s team told Nemo’s parents that he needed a heart transplant.
“We were very surprised,” Lopez says. “I didn’t know anything about transplants or cardiologists, and it’s very surreal to see your child in an ICU bed, but Dr. Nigro was very highly recommended, so we listened.”
Nemo was admitted to Rady Children’s on Aug. 16, 2021. What followed was an eight-month fight for his life, filled with complication after complication. He was hit with infections and put on a left ventricular assist device, which replaces the function of a failing heart. “Everything you could imagine going wrong did,” Lopez says. “He was so sick they had to make him inactive on the transplant list until he was well enough to survive a transplant. It took quite some time, but he did it!”
As a consequence of all the complications Nemo faced, and the fact that his heart was failing, other organs followed suit. Because he lost function in his kidneys, the transplant team at Rady Children’s determined that his best chance for a positive outcome would be a kidney transplant as well as a heart transplant—something that had never been done before at Rady Children’s. The transplant team was up for the challenge.
“Nemo’s heart disease was very severe. Life-threatening. He was transferred to us in extremely critical condition, and the heart team truly saved his life,” explains Elizabeth Ingulli, MD, a pediatric kidney transplant specialist and medical director of the Kidney Transplant Program at Rady Children’s. “His heart disease was so severe that his kidneys weren’t getting what they needed, and they did not survive his illness. Once he was in better shape and was able to get a new heart, we had to decide if he would only get the heart, or if he’d get both. It was clear to the team that he would have a better chance of survival if he had both, so we embarked on a path to do it safely and effectively. We made it clear to his family that this would be a first at Rady Children’s, and they put their faith in us. That was very important.”
Dr. Nigro adds: “Nemo was in a complicated situation, and we didn’t think he’d do well without both the heart and the kidneys. He would need a kidney transplant eventually anyway.” Doing both transplants at the same time meant that the organs could come from the same donor, which reduces the risk of rejection and reduces the likelihood that Nemo would need dialysis in the future.
Dr. Nigro and Dr. Ingulli worked collaboratively with other members of the Hospital’s transplant team, including experienced transplant surgeons from UC San Diego, to coordinate the complex surgeries. On Feb. 8, 2022, Nemo received his new heart. A day later, his new kidneys were transplanted.
Nemo was discharged on March 11, 2022. He has since been on the road to recovery and a bright, healthy future —a future he’ll never take for granted.
“One day I was in a hospital in Arizona, and the next day I woke up in a different room in California,” he recalls. “I was really confused about what was going on. I couldn’t move my neck. I couldn’t talk or move at all; I was in a bed paralyzed and didn’t know what to do. Today, I appreciate everything everyone has done for me.”
While his doctors are still uncertain what caused his heart to fail—an infection, perhaps, or a genetic condition that progressively worsened without symptoms—they say Nemo’s prognosis is excellent.
“We expect Nemo to have a great quality of life and be able to do all normal activities,” Dr. Nigro says. “He’ll have to follow up with the team and take chronic medications. Assuming he does that well and we do our job well, he’ll do well long-term.”
His mom agrees: “You look at him now and you would never know he went through all he did.”
Nemo spent his first day out of Rady Children’s playing basketball. “I’ll be able to do anything I want to do,” he says.
After spending several months in San Diego for follow-up visits with the Rady Children’s team, Nemo and his family will soon resume their normal lives back in Arizona.
“We couldn’t have asked to be at a better place—we were meant to be here,” Lopez says. “They tell you exactly what’s going on and what’s happening with your child. We were with them so much that we miss seeing them every day! You truly become a team.”
The family also recognizes that Nemo would not be here today if not for the donor and the donor’s family, who saved his life.
“It’s such a bittersweet feeling,” Lopez says, “because you’re so happy to know your son is going to feel better and be able to walk and breathe again, but you can’t help thinking about the donor’s family and what they’re going through. My son would like to meet them.”
Now 13, Nemo sounds beyond his years when he reveals what he’d like to say to the donor’s family: “Thanks for giving me life. They had to lose someone to save me. But they live on in me.”
Published in the Summer 2022 issue of Healthy Kids Magazine