MANHATTAN (WABC) -- A 10-year-old girl from the Bronx is celebrating her 1-year "Heart-a-versary."
Delaney "Chi Chi" Soto got the best birthday gift last year when she received a much-needed heart transplant on January 31, 2022, at Hassenfeld Children's Hospital at NYU Langone.
Now just days before she turns 11, she's celebrating the success of her surgery and her birthday with her favorite care team at NYU Langone.
"She got an early birthday gift," says mom, Katherin Rivera. "It's been a very long road, needless to say."
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."
Chi Chi had five open heart surgeries and had experienced end-stage heart failure before the procedure last year. She went into cardiac arrest in 2019 and had to have an implantable cardioverter defibrillator installed. Despite the implant, she went into cardiac arrest again in 2021 and she was placed on ECMO. Her mother has had to perform CPR on her daughter before her heart could be shocked back into rhythm.
Chi Chi's condition kept her in and out of the hospital her whole life.
"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."
"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. The child life specialists at NYU Langone 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.
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