Girl Receives New Heart for 10th Birthday After Five Open-Heart Surgeries Since Birth

"It's really amazing. I look at her every day and I'm like I can't believe this happened and that she looks so great. It's very mind-blowing," her mother Katherin Rivera told PEOPLE

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Published on March 11, 2022 04:09 PM

A girl from New York City is getting a new lease on life after having a heart transplant days before her 10th birthday.

Chi Chi Soto — who is being identified by her nickname — received the new heart at Hassenfeld Children's Hospital at NYU Langone on Jan. 31st.

"It's really amazing," her mother Katherin Rivera told PEOPLE. "I look at her every day and I'm like I can't believe this happened and that she looks so great. It's very mind-blowing."

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Soto was diagnosed 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, according to the hospital.

"It was very tough," Rivera admitted. "I was very young when I had her. I had no idea what I was getting into. No idea."

Soto has had five-open heart surgeries since her birth in 2012 and experienced end-stage heart failure.

"I'm going to describe it as, without her having the heart transplant, it was always in fear of having something happen, like a ticking bomb," Rivera told PEOPLE. "Like any day she would not feel well, I'll always had a little suitcase near the door so [if] she never felt well, I would just go to the hospital. It was a very scary thing."

She was given an implantable cardioverter defibrillator after experiencing cardiac arrest and in 2021, she was placed on ECMO. She was brought to NYU Langone's Hassenfeld Children's Hospital after another cardiac arrest.

"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," Dr. Rakesh Singh, a pediatric cardiologist and the medical director of the hospital's Pediatric Heart Failure and Transplantation Program at the hospital, said on the hospital website.

He continued, "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."

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Singh estimates that 50 to 80 percent of individuals with Noonan syndrome have a congenital heart defect.

On Jan. 4, Soto was registered on the UNOS heart transplant waiting list, according to the hospital. While waiting for a new heart, she did remote learning and made friends in 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 told TODAY. "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."

Her mother added, "Wherever she goes, she is well known. She will change you. If you're having a bad day, Chi Chi will make the day turn around. She inspires you to do better."

The wait came to an end on Jan. 31 when a match was found for Soto.

"For Chi Chi, heart transplantation was the only lifesaving option for her to have an improved second chance at life," Sigh said.

"It's been a life-changing experience but I wouldn't change anything of it," her mother shared with PEOPLE. "It's been hard. You have to be a little crazy to do this but it's been great. They made it so much easier."

With the transplant complete, Soto is now out of the hospital and Rivera plans to go on adventures with her daughter.

"I love to explore and try new things so Chi Chi is coming along," she shared. "We're going to do everything, above and beyond."