‘She Never Gave Up:’ Jasy’s Heart Health Scare Turns Remarkable Recovery

As a healthy, active, and playful 10-year-old, Adriana didn’t suspect anything serious when her daughter, Jaslyn (Jasy), developed a persistent cough in April 2023. Unfortunately, the cough worsened over time despite trying her usual remedies and seeking medical care.  

After concerning new symptoms emerged, continued follow-up with Immediate Care, and a trip to the Emergency Department, more thorough testing revealed something Adriana could have never predicted: an abnormality in Jasy's heart.

“Her heart? No, we’re here for a stomachache. Something isn’t right with her stomach,” Adriana recalls saying to the doctors.

What followed was an emergency ambulance ride to Lurie Children’s and a wave of panic in both Adriana and Jasy.

“You go there thinking it’s for something different, and then it ends up being something really scary,” Adriana said.

A Difficult Diagnosis 

Jasy and Adriana arrived at Lurie Children’s to a robust team of people ready to help Jasy. Quickly, the Lurie Children’s Heart Center determined she had been retaining a concerning amount of fluid because her heart wasn’t squeezing properly, causing fluid to build up in places it shouldn’t, like her lungs, seriously impeding her breathing.

Adriana learned that Jasy’s heart was only squeezing at 6%, and she needed fast intervention from Extracorporeal membrane oxygenation (ECMO). ECMO is a temporary cardiopulmonary bypass used to support a patient with heart or lung failure. The ECMO circuit drains blood from the body, exchanges oxygen and carbon dioxide, warms the blood and pumps it back into the child's body. Placing a child on ECMO allows time for the heart and/or lungs to improve or to serve as a bridge to other long-term support or heart transplants.

In the frightening moments that followed, Adriana recalls the cardiovascular surgical team speeding to the operating room (OR) while she made her way to the hospital’s Chapel for a quiet minute alone.

When she was able to speak to Jasy’s surgeon post-ECMO procedure, they shared that while Jasy was in stable condition now, she did experience a cardiac arrest at the start of the operation which caused a stroke.

This news was shocking and difficult for Adriana to hear and process. Jasy would have an even tougher road back to health than they initially thought.

The Road to Recovery

Jasy spent two weeks on ECMO at Lurie Children’s while her care team determined the next best step – a ventricular assist device (VAD). VADs are mechanical pumps used to support heart function and blood flow in patients with end-stage heart failure. In pediatrics, VADs are most commonly used to support the heart while a patient waits for a donor heart, to recover a heart in temporary dysfunction, or while determining the best course of management.

Jasy had her VAD procedure at the end of April 2023 which would take over the work of her heart so that she could begin recovering from her stroke. The stroke had caused her to lose some function on her right side as well as her speech.

While it was scary and frustrating for Jasy to realize the effects the stroke had on her, Adriana says she kept the most positive attitude through it all, and “always had a smile on.”

This perseverance saw her through three months of intense physical, occupational and speech therapy at Lurie Children’s where Jasy eventually regained a fair amount of speech, the ability to walk and eat on her own, and the working function of her right side. “She was always pushing herself,” Adriana said. “When she started to say little words again like ‘hi,’ ‘mom,’ ‘dad’ and her sister’s name, it was extra exciting for me.”

Despite being so young, Jasy was well aware of the work she had to continue doing in therapy to both help her regain strength from her stroke as well as the strength needed to live life with a VAD. Adriana says she’d go above and beyond what was asked of her in and outside of her therapy sessions, and it made all the difference.

After another few weeks at Shirley Ryan Ability Lab, Jasy was able to head home with the support of her VAD, returning her to a version of childhood normalcy that she’d been missing the last few months.

“She was able to be home and do kid stuff,” Adriana said.

One Last Heart Hurdle

As a mom who so badly wanted to see Jasy maintain her regained strength and health, Adriana says she was really hoping that her heart would recover on the VAD. Though they always knew a transplant was a possibility. In fall 2023 that possibility would become the official treatment plan – Jasy was listed on the recipient list and their wait began.

In February 2024, after four months on the list, Jasy got the call that her new heart was on its way. It came at a time when she was feeling overwhelmed by the limitations of life with a VAD, and even wishing for its removal as part of her Christmas wish list. The swimming and dancing-loving 10-year-old was ready for the freedom a heart transplant would give her.

Jasy’s transplant surgery went off without a hitch the day after they got the call. It was the most resilient post-op recovery given her ability to rehabilitate from the stroke while supported with a VAD.

“After her transplant, I was mentally prepared to see her asleep for a few days, so many medications, and the tubes in her chest. Everything. I was ready for all that,” Adriana said.” But she’s so strong. That first night after her surgery, she was moving her hands and her feet.”

The following morning, Adriana woke up to the sound of a nurse helping Jasy reach for a cell phone to type something. Not even 24 hours later, Jasy had one thing on her mind – a post-transplant drink of champions – a Refresher from Dunkin Donuts. Adriana remembers the mood completely lifting in that funny, light-hearted moment, and a rush of confidence that her daughter was going to be okay.

“I felt so much joy just seeing her being good.”

And that moment wasn’t a false alarm, Jasy’s recovery was an extremely fast, encouraging and impressive one.

“It hadn’t even been a week and she was up walking up and down the hallway, saying ‘hi’ to everyone,” Adriana said. “Everyone was so amazed. You see her right now and wouldn’t even know she went through heart surgery.”

Jasy had such an incredible recovery and showed so much determination through her other heart procedures and challenges the year prior that during a post-transplant therapy session, the therapist could not tell which side of her body was originally impacted by the stroke. She had come so far with support from her teams at both Lurie Children’s and Shirley Ryan AbilityLab who have worked with Jasy for the last nine months helping her to become “stronger than ever.”

“I tell her all the time that she’s our big miracle,” Adriana said.

Jasy is currently being monitored a bit longer at Ronald McDonald House but should be heading back home soon with her heart, stronger than ever, ready to get back to dancing, swimming, ballet, and starting 6^th grade!

“She went through so much. I’m so happy and so proud of how much effort she put in. She never gave up.”

Spending so much time at the hospital can be a challenging experience for patients and families, but Adriana said that Jasy’s care team “stole her heart.”

“She’s that kid that now loves going to the hospital because she’s ready to see her friends again,” she said. “It’s a party when she’s there, she loves it.”

Adriana is especially grateful to Jasy’s care team for creating a much-needed sense of calm and confidence in her during an emotionally charged and uncertain year. Dr. Michael Mongé, Dr. Osama M. Eltayeb, Dr. Anna Joong, Dr. Adam Morrison, Nora Hammond, APRN-NP, Grace Macek, APRN-NP, and all the “amazing” nurses left a special impression on the Rios family.

“Every time we go back to Lurie Children’s, I feel like I’m with family,” she said.