Nevaeh Tyus and mom Leshonda Armstrong return to Hassenfeld Children’s Hospital to celebrate a second “heartiversary” with their dedicated care team.
Credit: NYU Langone Staff
Nevaeh Tyus, a vibrant 2-year-old from Somerset, New Jersey, returned to Hassenfeld Children’s Hospital at NYU Langone to celebrate the two-year anniversary of her lifesaving heart transplant, surrounded by her dedicated care team. who made her second chance at life possible. This included her doctors and nurses, as well as the certified child life specialists and board-certified music therapists within Sala Institute for Child and Family Centered Care, all who made her second chance at life possible.
A Critical Diagnosis of Dilated Cardiomyopathy
“Nevaeh was in dire need of a new heart,” said T.K. Susheel Kumar, MD, pediatric cardiac surgeon and surgical director of the Pediatric Heart Failure and Transplant Program at Hassenfeld Children’s Hospital, who performed Nevaeh’s transplant. “To see her two years later as a healthy, happy child is quite rewarding.”
At just 5 months old, Nevaeh was referred to Hassenfeld Children’s Hospital from a local hospital in New Jersey after experiencing respiratory stress and showing signs of heart failure. Rakesh Singh, MD, pediatric cardiologist and medical director of the Pediatric Heart Failure and Transplant Program, and his team confirmed dilated cardiomyopathy (DCM), a congenital heart defect that occurs when the heart’s main pumping chamber becomes enlarged. When this happens, the tissue thins, causing it to pump with less force and compromising its ability to pump blood effectively.
DCM, also known as congestive cardiomyopathy, is the most common form of cardiomyopathy in children, affecting 50 to 60 percent of all pediatric cases. As the disease progresses, the heart weakens, leading to heart failure and fluid buildup in the lungs, liver, abdomen, and lower legs.
On December 30, 2022, Nevaeh was admitted to the Congenital Cardiovascular Care Unit at Hassenfeld Children’s Hospital after her symptoms worsened. Despite medical therapies, it became clear she needed a new heart.
A Lifesaving Gift on Mom’s Birthday
“We were told Nevaeh needed a heart transplant, or she wasn’t going to make it,” said her mom, Leshonda Armstrong. “I could not have wished for a better team for Nevaeh. Through this difficult time, every specialist was absolutely amazing, doing everything for my baby I could ever want.”
On January 11, 2023, she was placed on the United Network of Organ Sharing heart transplant waiting list. Less than two weeks later, on January 25—Leshonda’s birthday—Dr. Singh called with the news that a donor heart had become available. The very next day, Nevaeh underwent a successful heart transplant, thanks to Dr. Kumar’s expert care.
On February 28, 2023, Nevaeh was discharged from the Congenital Cardiovascular Care Unit after receiving a new heart.
Credit: NYU Langone Staff
After a month of recovery in the hospital, Nevaeh was finally able to go home, where she celebrated her first birthday on April 2, surrounded by her family.
A Heartfelt Keepsake, Thanks to Heartbeat Music Therapy
While Nevaeh waited for her new heart, Melissa Wasserman, MMT, a board-certified music therapist, recorded Nevaeh’s original heartbeat using a special stethoscope. After her successful transplant, Wasserman recorded her new heartbeat and inserted both recordings into a teddy bear for Nevaeh to keep as a unique memento.
“This gives children and families the opportunity to commemorate their new heart, and parents love hearing the difference in heartbeats,” said Wasserman. These services are provided thanks to Sala Institute for Child and Family Centered Care.
“Two years later, Nevaeh still carries this bear around everywhere,” said Leshonda. “You can hear a big difference between the pre- and posttransplant recordings. It’s beautiful.”
Overcoming a Rare Cancer After Heart Transplant
Nevaeh’s transplant was a success, but about a year after transplant, she began experiencing severe fatigue, fever, and abdominal swelling. Concerned that the symptoms were related to her heart, Leshonda turned to Dr. Singh and team. After further evaluation, Dr. Singh suspected posttransplant lymphoproliferative disease (PTLD), a rare cancer that can affect people after an organ or bone marrow transplant. Dr. Singh consulted with Gloria P. Contreras Yametti, MD, a pediatric oncologist and bone marrow transplant and cellular therapies specialist at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at Hassenfeld Children’s Hospital. Together, they diagnosed Nevaeh with PTLD.
PTLD can occur in transplant recipients due to the immunosuppressant medications required to prevent organ rejection. These medications weaken the immune system, sometimes causing immune cells to grow uncontrollably. Early diagnosis and treatment are crucial for managing this uncommon disease.
Thanks to the collaborative efforts of her medical team, Nevaeh underwent targeted treatments and responded well to therapy. Her last day of treatment was April 30, 2024, and she is doing remarkably well.
A Bright Future Ahead
Nevaeh, as healthy as ever, enjoys dance classes and time with family.
Credit: Leshonda Armstrong
Today, Nevaeh is thriving, enjoying dance classes and many celebrations with family and friends. “You would never know that she had been sick. She’s happy all the time,” said Leshonda.
Nevaeh and Leshonda returned to Hassenfeld Children’s Hospital in February 2025 to celebrate two years with her new heart with her entire care team.
Leshonda stresses her compassion for the donor’s family, who experienced a traumatic loss. She and her family say they are forever grateful for Nevaeh receiving the gift of life.
Media Inquiries:
Katie Ullman
Phone: 646-483-3984
Kathryn.Ullman@NYULangone.org
