A 10-year-old in New York City is celebrating after receiving an urgently needed heart transplant just days before her birthday.
For all of her young life, Chi Chi Soto — who is being identified by her nickname — has dealt with Noonan syndrome, a disorder that can cause heart defects and prevents normal development in the body. Soto was diagnosed with the disorder in utero, and had her first open-heart surgery shortly after she was born in 2012.
After the surgery, she spent three months in a neonatal ICU. Even when she was cleared to go home, it was just the beginning of a long road for Soto and her mom Katherin Rivera: The next nine years would be marked by four more open heart surgeries. Eventually, Soto was diagnosed with end-stage heart failure.
"I have been in this journey with Chi Chi since she was in the womb," Rivera said. "It's tough being a parent but nobody really prepares you to have a child like this."
In July 2019, the then seven-year-old was given an implantable cardioverter defibrillator (ICD) after a cardiac arrest. Earlier 2021, she was placed on ECMO and brought to NYU Langone's Hassenfeld Children’s Hospital after another cardiac arrest. There, Rivera and Soto met Dr. Rocky Singh, a pediatric cardiologist and the medical director of the hospital's Pediatric Heart Failure and Transplantation Program.
"She just wasn't doing well," Singh said. "She really just wasn't feeling very active, had lots of belly issues, wasn't eating well, had low energy."
The situation came to a head in 2021, when Soto was "in and out of the hospital" at NYU Langone. In December 2021, she went into cardiac arrest at home. Rivera was able to perform CPR and Soto's ICD shocked her heart back into a normal rhythm, but even when she got to the hospital ICU, she was still "quite sick," Singh said.
"We were able to stabilize her on medications to support the heart function, but by that point, it was obvious that she was very sick and the only way she could live a long, healthy life was with a heart transplant," Singh said.
Soto was brought to the Congenital Cardiovascular Care Unit at the hospital. On Jan. 4, she was registered on the UNOS heart transplant waiting list, and she, her family and her doctors prepared to wait. While hospitalized, Soto kept up on school with remote learning and made friends with other children on the ward.
“We all love Chi Chi. We’ve gotten very close with her this last year. She’s got a great personality ... she was like the mayor of the cardiac ICU," Singh said. "She would go on these walks and like give up candy to the nurses and she would check on other patients to see how they’re doing."
Just a few weeks later, on Jan. 31, 2022, a heart came through for the ten-year-old. Singh said the relative speed of the donation was "lucky."
"I was prepared to wait three or four months," said Rivera.
The mom of two said that she "still can't believe" that everything came together to get Soto a heart.
"It was late, like 11:00 at night, and the nurses and doctors come in and they're like '(Singh) wants to talk to you,' and I'm looking at the monitor, like, 'What's wrong? She's fine,'" Rivera recalled. "I wasn't even thinking that that was going to happen. I was thinking all the bad."
"(Singh) was like 'I got (Chi Chi) a heart,' and I said 'Shut up. What are you talking about?'" Rivera continued, laughing. "It was so soon. I was like 'Are you serious? Like, I can't talk to you right now.' All the doctors, everybody was just crying, and I just ... couldn't believe it. There were no words."
Two days later, Soto received a heart transplant, just 10 days before her 10th birthday.
"It was just amazing," Rivera said. "An amazing, amazing thing."
While Singh was not the doctor who performed the transplant surgery — that was Dr. T.K. Susheel Kumar, a pediatric cardiac surgeon and the program's surgical director — he said it was incredible to watch Soto begin to recover from the years of heart trouble.
"I've been doing this for almost 15 years ... and been a part of over 150 heart transplants in kids, and it never gets old," Singh said. "This is a patient who, to be honest, is lucky to be alive ... when you look at her life before the transplant, especially last year (where) she spent more days in the hospital than at home, it's so rewarding to see how we're able to take children who are very complex, high-risk in a sense, and give them a completely different life."
For Rivera and Soto, that completely different life began when Soto was discharged from the hospital on Feb. 24.
"I look at her and I don't believe it," Rivera said, noting that her daughter loves spending time with her sister and their pet dog. Another hope for the family is that they can travel soon.
"There's this mountaintop ... the altitude is so high and I've never been able to take her because of her heart conditions," Rivera said. "So that's my thing. I would love to take her there. It's so high up that you can see the clouds, just next to you. It's amazing. I said 'One day, we're going to go up there, just watch,' and that day is soon to come."
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