Nine days before she turned 10, Delaney Soto from the Bronx got the best birthday gift of her young life. She received a much-needed heart transplant on January 31, 2022, at Hassenfeld Children’s Hospital at NYU Langone, after having five open heart surgeries and experiencing end-stage heart failure that kept her in and out of the hospital her whole life.
“She got an early birthday gift,” says her mom, Katherin Rivera. “It’s been a very long road, needless to say.” Delaney, whose nickname is “Chi Chi,” already has a long story to tell starting shortly after she was born on February 9, 2012.
Chi Chi was diagnosed at 20 weeks in utero with Noonan syndrome, a disorder that can cause congenital heart defects in addition to preventing normal development in various parts of the body.
“It’s estimated that 50 to 80 percent of individuals with Noonan syndrome have a congenital heart defect,” says Rakesh Singh, MD, pediatric cardiologist, medical director of the Pediatric Heart Failure and Transplant Program at Hassenfeld Children’s Hospital, and associate professor in the Department of Pediatrics. “For Chi Chi, heart transplantation was the only lifesaving option for her to have an improved second chance at life.”
What Led to Chi Chi’s Heart Transplant
Chi Chi spent the first three months of her life in the Neonatal Intensive Care Unit after her first open heart surgery. Since then, she has grown up in and out of the hospital. “We’re lucky if we have a year without any hospitalizations,” says Katherin. “It’s been very difficult to watch Chi Chi go through this, but I choose not to let that stop us. Her sickness is secondary to how she lives. It’s hard, but it’s been part of us for the past 10 years.”
In July 2019, Chi Chi went into cardiac arrest and had an implantable cardioverter defibrillator (ICD) placed. After a second cardiac arrest in May 2021, which required extracorporeal membrane oxygenation (ECMO), Chi Chi was referred to Dr. Singh and Rebecca M. Rogoff, NP, nurse practitioner in pediatric cardiology, and brought to Hassenfeld Children’s Hospital for care.
Between May and December 2021, Chi Chi was in and out of the hospital while the Hassenfeld Children’s Hospital care team managed her heart. The most drastic decline took place on December 19, 2021, when Chi Chi went into cardiac arrest at home, requiring Katherin to spring into action and perform CPR before the ICD shocked her back to a normal heart rhythm. She was brought to the Congenital Cardiovascular Care Unit (CCVCU) at Hassenfeld Children’s Hospital where she was started on two continuous intravenous medications to support her heart function.
“It was clear that after months of monitoring Chi Chi that she was quite limited in doing the basic things a growing young child could do with a healthy heart,” says Dr. Singh. “With her continued heart failure symptoms despite maximal medical management of her condition and lack of other surgical options, the only option for improved quality of life was a heart transplant.” Dr. Singh and the care team listed Chi Chi on the United Network for Organ Sharing heart transplant waiting list on January 4, 2022.
Chi Chi spent the next four weeks in the CCVCU awaiting a heart. Our child life specialists kept her active during her stay with a daily schedule including school, therapy, and playtime. On January 31, 2022, Chi Chi received a donor heart, and the transplant procedure was performed by T.K. Susheel Kumar, MD, pediatric cardiac surgeon and surgical director of the Pediatric Heart Failure and Transplant Program.
As a lifelong battle, the family is finally feeling relief and has a new lease on life with Chi Chi’s new healthy heart pumping normally. On Thursday, February 24, 2022, Chi Chi was discharged from Hassenfeld Children’s Hospital, after being hospitalized the last two months. Her whole care team was there for a sendoff celebration. Chi Chi is looking forward to eventually traveling to visit family in the Dominican Republic.
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