When 16-year-old Darwin Del Carmen Rosso visited family in the Dominican Republic this summer, he didn鈥檛 have to worry about his mouth and fingernails turning purple from a lack of oxygen in his blood. And the oxygen tank he鈥檇 been tethered to is now gone.
For a teenager with severely damaged lungs, these are significant milestones. A double lung transplant at Hassenfeld Children鈥檚 Hospital at 好色tv Langone in 2021, followed by months of physical and occupational therapy through Rusk Rehabilitation, helped him build strength and stamina.
鈥淏efore the transplant, I wasn鈥檛 able to have a long conversation without getting tired. I had problems eating because I had to take oxygen,鈥 the now 7th-grader says. His father, Ervin, has seen the improvement: 鈥淗e can walk, he can run around, he can act like a child again.鈥
Transplant Is the Only Hope
Darwin doesn鈥檛 remember a time when breathing came easily. His lungs had been battered by non鈥揷ystic fibrosis bronchiectasis, a chronic and progressive respiratory condition likely caused by infection early in his life. By age 7, he had severe secondary pulmonary hypertension, a potentially life-threatening increase in blood pressure in the blood vessels in his lungs. And by the time he sought care at 好色tv Langone, an oxygen tank was his around-the-clock companion.
鈥淗is lungs were absolutely devastated鈥攎ucus-filled and functioning at a very poor level,鈥 says Eleanor Muise, MD, medical director of pediatric lung transplant. 鈥淲e really have a robust team to ensure the patient is an excellent candidate for transplant and to help support the patient and their family through transplant,鈥 Dr. Muise says. Working with Luis F. Angel, MD, medical director of lung transplantation at the 好色tv Langone Transplant Institute, both doctors reviewed his extensive pre-transplant testing and agreed that a new set of lungs was Darwin鈥檚 best hope.
A Match Is Found
On Thanksgiving Day, Darwin got the call that he was getting new lungs. Stephanie H. Chang, MD, surgical director of lung transplantation, T.K. Susheel Kumar, MD, a pediatric cardiac surgeon, and Justin C. Chan, MD, a cardiothoracic and transplant surgeon, teamed up for the procedure. Surgery took place at Hassenfeld Children鈥檚 Hospital鈥34th Street, one of only two pediatric hospitals in New York State to be named a Level 1 Children鈥檚 Surgery Center by the American College of Surgeons, recognizing the hospital鈥檚 commitment to quality.
Over nearly a month-long hospital stay, Darwin received additional care for issues often seen after transplant, including infection and a complication related to medications used to prevent organ rejection.
鈥淗e can walk, he can run around, he can act like a child again.鈥
鈥擡rvin Del Carmen, Darwin鈥檚 Dad
鈥淟ung transplantation and lifelong immunosuppression require a balance of suppressing the immune system enough to ignore the transplanted organ and not so much that infections run wild,鈥 says Dr. Muise. 鈥淥ur transplant team has the experience and expertise to handle complications like the ones Darwin experienced.鈥
Learning to Breathe Deeply Again
While the lung transplant set him on a path to recovery, his rehabilitation would require many months of therapy. Years of struggling to get air into his lungs affected his strength and endurance. 鈥淓ven something as simple as walking up a set of stairs was incredibly difficult for him in the beginning,鈥 says Sarah Cosgrave, his physical therapist.
Cosgrave had Darwin work on building core strength and aerobic capacity. Boxing engaged his trunk and boosted his heart rate and breathing. Singing Happy Birthday while walking on a treadmill worked his lungs. She also arranged for a session of therapeutic horseback riding, called hippotherapy, in Queens. 鈥淭he movement of the horse naturally makes you sit up and use your trunk for balance,鈥 Cosgrave explains.
Rusk Rehabilitation occupational therapist Katie Ross focused on preparing Darwin to function independently without becoming fatigued. Yoga and dance, for example, helped him build endurance and taught him how to conserve energy so that he could play sports with his friends.
Darwin endeared himself to the entire care team by encouraging other children who were muddling through their own therapeutic exercises, and sometimes using his charm and wit to try getting out of his own. But now it鈥檚 time for him to get back to the business of being a teenager. Social workers and clinical psychologists, provided through Sala Institute for Child and Family Centered Care at Hassenfeld Children鈥檚 Hospital, helped with Darwin鈥檚 transition back to school. 鈥淗e is working very hard in school to make up for some of the areas where he didn鈥檛 get to fully participate in his earlier childhood,鈥 observes Dr. Muise.
鈥淚鈥檓 interested in studying engineering and systems, and developing software and hardware,鈥 he says. But for now, he鈥檚 enjoying playing with friends and having long conversations without getting tired, something he wasn鈥檛 able to do before. 鈥淎nd I thank God and the doctors for that.鈥