Celebrating 35 Years of Pediatric Heart Transplantation Success

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At NewYork-Presbyterian Morgan Stanley Children's Hospital, the Program for Pediatric Cardiomyopathy, Heart Failure, and Transplantation is celebrating 35 years of pediatric heart transplantation success, achieved through its unwavering commitment to providing the highest level of care for children with complex congenital heart diseases, and cardiomyopathies and pioneering scientific advances in pediatric heart transplantation to extend survival and quality of life.

Since 1984, when Columbia surgeons performed the world's first successful pediatric heart transplant in a 4-year-old boy with complex congenital heart disease, more than 550 infants and children have received new hearts at the Hospital, which has been consistently ranked in the top 3 nationally in pediatric heart transplant volumes, with outcomes exceeding national and local benchmarks as reported by the Scientific Registry for Transplant Recipients. In 2018, the Hospital was ranked No. 1 in the country for pediatric heart transplant volume.

“Our mandate, from the very beginning, was to never say no to any child, even those with the most complex heart conditions,” says Linda J. Addonizio, MD, Director of the Program for Pediatric Cardiomyopathy, Heart Failure, and Transplantation at NewYork-Presbyterian Morgan Stanley Children’s Hospital and Professor of Pediatrics at Columbia University College of Physicians and Surgeons. “When we received children with very unusual anatomies, who were turned down by other programs, we figured out a way to transplant them. That mandate and passion continues today. We are not afraid of a challenge, and if people tell us something can’t be done, we usually figure out a way to do it. Under our care and the creative expertise of our multidisciplinary team, hundreds of children have been successfully transplanted since 1984, and in spite of the complexity of our cases, we consistently have outcomes that are above the national average for pediatric heart transplants.”

The Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation is distinguished by its dedicated, multidisciplinary team of pediatric heart transplant surgeons, cardiologists, psychiatrists, pediatric transplant nurse practitioners and nurses, donor coordinators, transplant pharmacists, child-life therapists, nutritionists and social workers who collaborate to provide personalized and comprehensive diagnostic and therapeutic plans for children and young adults with heart failure from various cardiomyopathies (genetic or acquired), congenital heart disease, or following chemotherapy.

“One very important aspect of our program is continuity of care,” says Dr. Addonizio. “If a child with cardiomyopathy ultimately needs a heart transplant, the same team continues to provide seamless care, giving the family and child much-needed continuity. With the proper heart failure management, many children may never need a transplant.”

The program has pushed the envelope for transplantation in complex congenital heart patients, providing transplants to many children who are turned down by other programs. “We have become adept at transplanting children with severe pulmonary hypertension using a management protocol that we have been perfecting since the late 1980s, and have devised methods for transplanting children with effective single lung physiology, sparing both of these complex patient populations from a much higher risk heart-lung transplant,” says Dr. Addonizio. “We were also the first in the U.S. to perform an across blood type heart transplant in 2001, and we routinely transplant infants across blood types. We also successfully transplant patients with pre-formed antibodies from previous surgeries, a high-risk transplant that many other centers turn away.”

Another area of distinction is the team’s success with children who have “failed Fontan physiology,” the result of a Fontan procedure to repair hypoplastic left heart syndrome (HLHS), a rare congenital disability in which the left side of the heart does not develop normally. “Children with HLHS require multiple surgeries, including a Fontan procedure, which diverts blood returning from the veins directly to the main artery leading to the lungs, instead of the blood being pumped from the heart,” explains Dr. Addonizio. “When we first began to do transplants in the mid-1980s, we started to see children who underwent Fontan procedures come in very ill with heart failure and associated problems with their liver, kidneys, and other organs.”

“In 1987, we successfully treated our first failed Fontan physiology patient, and since then we have improved our management protocol and have achieved excellent outcomes in this very ill and complex population, with many of the patients either not requiring heart transplants, or if they do, they do not need a combined heart and liver transplant,” says Dr. Addonizio. “Due to our continuing success with this patient population, we have established the Comprehensive Fontan Clinic here at NewYork-Presbyterian Morgan Stanley Children’s Hospital to provide comprehensive, multidisciplinary care to children with failed Fontan physiology that will enable them to thrive.”

The team has also pioneered the use of the latest ventricular assist devices for children of all ages and sizes as bridge-to-heart recovery or transplant. “In 2016, our surgeons successfully implanted a Berlin Heart ventricular assist device in a one-day-old infant, the youngest patient ever to receive one,” says Dr. Addonizio. “We are currently participating in the multi-institutional NIH-funded PumpKIN trial of the Infant Jarvik 2000 Heart System, a ventricular assist device aimed to support the smallest of our patients while minimizing complications encountered with other systems of mechanical support.”

When cardiomyopathy is known or suspected of having a genetic cause, the Cardiogenetics Program of NewYork-Presbyterian/Morgan Stanley Children's Hospital provides genetic evaluation and ongoing comprehensive care for children and other family members. This program provides sophisticated genetic analysis to help make a diagnosis, as well as determine family members’ or future family members’ risk to develop a similar cardiomyopathy.

Dr. Addonizio and her team are deeply committed to research on cardiomyopathy, heart failure treatment, and transplantation to advance knowledge and improve care for these conditions. “We have been designated as a Children’s Cardiomyopathy Foundation (CCF)-Accredited Center of Care Program, not only for our outcomes, but also for our participation in multiple NIH and industry-sponsored trials related to genetics, cardiomyopathy, and heart failure,” says Dr. Addonizio. “Our team was also one of the founders of the Pediatric Heart Transplant Study Group in 1991, the most important prospective research database in pediatric heart transplantation, and is an active research site in an NIH Specialized Centers of Clinically Oriented Research (SCCOR) grant beginning in 2004 and multiple studies through the NIH-sponsored Clinical Trials in Organ Transplantation in Children (CTOT-C) consortium beginning in 2009.”

As a result of 35 years of successful pediatric heart transplantation, Dr. Addonizio and her team are uniquely poised to provide longitudinal care to their patients. “We’ve transplanted children less than one year of age, and we take care of them until they are 24 years old, after which we turn them over to our adult cardiologist,” she says. “Many of our children are surviving 30 or more years with their heart transplant, and it’s quite a thrill to watch them flourish and attain their dreams.”