Isabella and the Heart Transplant Marathon
Something miraculous happened at NewYork-Presbyterian Morgan Stanley Children’s Hospital at Columbia University Irving Medical Center in May 2018: in an unprecedented back-to-back surgical marathon, three girls received heart transplants over one 24-hour period. That day, Isabella became a part of history.
Isabella’s heart condition started in June 2015 when she was just 9 years old. Her mother, Kristin, saw Isabella slumping lethargically in a chair in their Stony Point, New York home. At first, she thought it was just the weather: it was nearly 100º outside. But Isabella failed to improve.
“She wasn’t acting right or eating. Something was off,” Kristin recalls. A visit to a local urgent care center suggested pneumonia. But subsequent tests at a local hospital confirmed something much worse: Isabella was experiencing heart failure. Other organs were also failing, due to her diminished heart function.
She was rushed by ambulance to NewYork-Presbyterian/Columbia University Irving Medical Center. The hospital is known for exceptional pediatric cardiology care, earning top marks in U.S News & World Report’s “Best Children’s Hospitals” and attracting patients from around the world. Doctors there learned that Isabella’s left ventricle — the chamber of her heart responsible for pumping oxygen-rich blood to the rest of her body — was enlarged, likely due to a virus that had attacked her heart. Her ejection fraction (a measure of heart function) was less than 15 percent — a quarter of what it should be for a child her age. She received medication in the intensive care unit (ICU) for several weeks. As her ejection fraction increased and her organs recovered, her care team determined that her heart had regained enough strength for her to go home and continue follow-up care as an outpatient in NewYork-Presbyterian/Columbia’s pediatric heart clinic.
For the next year, Isabella continued to take medication and was able to play sports. In 2017, as part of her routine follow-up care in the clinic, she began wearing a heart monitor to assess her heart function more regularly. Her doctor, Dr. Linda Addonizio — founder of NewYork-Presbyterian/Columbia’s pediatric heart transplant program and current Director of the Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation — noticed that her heart was beating too quickly, with events of "non-sustained tachycardia." As a precaution, Isabella had an implantable cardioverter defibrillator (ICD) placed under the skin of her chest. The device would electrically restore her heart back to a normal rhythm if it pumped too quickly.
She kept up with monthly appointments to see Dr. Addonizio and pediatric cardiologist Dr. Warren Zuckerman, but despite these interventions, Isabella continued to slowly decline. By January 2018, she had a hard time keeping down food, her energy level, and ability to do any physical activities significantly declined, and she just wasn’t herself.
“I didn’t like the way she looked,” recalls Kristin, who called the doctors. They told her to pack a bag and bring her back to the hospital, where she was admitted again to the ICU. This time she needed a more invasive procedure: implantation of a left ventricular assist device (LVAD) by pediatric cardiac surgeon Dr. Paul Chai, to pump for her ailing heart. She had the lifesaving LVAD surgery on January 11 and was listed as the highest status on the heart transplant waiting list the following day. Isabella remained in the ICU for 83 days and was then able to return home on the LVAD while waiting for her transplant.
Short of a transplant, the LVAD was her last option. But it’s not meant as a lifetime treatment; LVAD is often used as a bridge in patients who are waiting for a heart transplant. Kristin and Isabella’s father, Marcos, were told it could take up to six months to receive a heart because Isabella has blood type O and could only receive a heart from a donor with blood type O.
Her recovery from the LVAD surgery took its toll. “It took her a month just to get out of bed,” notes Kristin. As a civil and environmental engineer whose expertise is pump design, she understood how the LVAD worked and learned how to take care of Isabella at home. “My goal was to keep her up mentally. There was no room for negativity,” adds Kristin, who would take off a total of 10 months from work to care for her daughter.
During a follow-up outpatient visit in May, they heard good news: a donor heart was available. Isabella, then 12, was admitted to NewYork-Presbyterian Morgan Stanley Children’s Hospital at Columbia University Irving Medical Center. Dr. Chai removed the LVAD and gave her a new heart on May 10, 2018.
Unlike her LVAD recovery, she bounced back quickly after the transplant: breathing tube removed 24 hours after the operation, sitting up in bed 24 hours after that, walking down the hall a day later, and back home just eight days after surgery.
After some tweaking of her post-transplant medications, Isabella continues to thrive. She’s finishing 8th grade, where she excels in math and science, and is excited to start high school. By all accounts, she’s a normal tween. She enjoys cooking, going to the mall with friends, painting and pottery, playing piano (Kristin brought her keyboard to the ICU), watching online videos to learn how to apply makeup, and playing with her Yorkshire terrier, Cookie. She sees her doctors monthly for check-ups and tests, all of which can conveniently be done the same day.
Kristin and Marcos credit the NewYork-Presbyterian/Columbia team for the extraordinary care that saved their daughter’s life, as well as the support from Kristin’s parents — who watched Isabella’s younger sister, Natalie, and came to the hospital almost daily. Her doctors and nurses were invited to her one-year anniversary party on May 10, 2019, along with two of the other families whose daughters benefited from the surgical marathon.
“Whomever we needed, that person was available in the hospital — specialists from hematology, nephrology, pharmacy, surgery, plus teachers who helped her keep up with her schooling — they were all incredible and all mobilized so quickly,” asserts Kristin. “I still keep in touch with the ICU nurses. They were all so amazing.”