NaSyah’s Heart Journey ‘Home’ to Lurie Children’s

“NaSyah plays hard,” mom, Hilary, says of her 14-year-old daughter who from an early age exhibited a type of fearlessness that might not be expected from a child with hypoplastic right heart syndrome (HRHS), a congenital heart defect. But the truth is, NaSyah learned resilience from the moment she was born. Bouncing back from unexpected and often concerning situations was something she was not only familiar with, but a rockstar at.

Diagnosed in utero two weeks ahead of delivery, Hilary had little time to process what an HRHS diagnosis would mean for her baby. “I was really young at the time, not really knowing what to expect. I was extremely scared,” she said.

She learned quickly that treatment for this condition was immediate and would sometimes mean managing unexpected hurdles. Just days after NaSyah was born, she experienced complications with one of her medications; it adversely impacted her breathing and emergency intubation was needed. This was the first resilient recovery NaSyah made to reach the next crucial step of care – a pattern that continued after her first open-heart surgery at five days old. The surgery, performed at another Chicagoland hospital, went well, but one of NaSyah’s lungs collapsed during recovery. Again, she preserved through extensive respiratory therapy and was eventually discharged after 1.5 months with oxygen support and a feeding tube.

After several months at home, NaSyah began showing indicators that her heart was working harder than it should have to. With a blue/purple-ish color around her lips, splotchy hands and feet and lethargy, her cardiologists determined she had pulmonary stenosis: a heart condition where the pulmonary valve, which controls blood flow from the heart to the lungs, becomes narrowed. She needed catheterization procedure before she went on to have her second open-heart surgery at 7 months.

Despite experiencing other setbacks in the hospital, NaSyah continued to push through everything thrown her way. With her mom by her side and the support of her family, she was unstoppable when it came to meeting her early developmental milestones and was even walking before she was 1 year old. She continued growing and gained strength to undergo her third open-heart surgery at 18 months: the Fontan procedure, an operation that eventually allowed NaSyah to come off her oxygen and have more freedom in her play.

NaSyah’s care continued throughout her childhood at another local institution for many years until they realized her narrowed pulmonary valve wasn’t correcting itself as she grew. The team there recommended a fourth open-heart surgery to repair it.

After learning the potential risk of a fourth open-heart surgery, Hilary sought a second opinion from Lurie Children's Heart Center. After meeting with a team from the Single Ventricle Center of Excellence, she was reassured there was an alternative, less-invasive path to pursue for 10-year-old NaSyah. Soon after the second opinion, Hilary transferred her daughter's care to Lurie Children's.

“The team at Lurie Children’s was very transparent and down to earth. Our first time coming in and meeting everybody we felt we were at home. We never looked back,” Hilary said.

In 2022, Lurie Children’s successfully performed a minimally invasive stent procedure to aid her pulmonary stenosis. Since then, NaSyah has remained under the care of a multi-disciplinary team who works with her to ensure she’s thriving not only in cardiac health but nutrition, mental and emotional wellness, and in school.

A Family-Centered, Holistic Approach

As part of NaSyah’s specialized care, she underwent neuropsychological testing, which evaluates a patient’s cognitive strengths and weaknesses, including attention, memory, language, visual reasoning and thinking speed. This was the first time NaSyah was evaluated in this way, and it revealed she was in fact struggling with learning disabilities as well as mental health challenges. Suddenly, NaSyah’s recent performance struggles in school made sense to her and her mom.

With this new knowledge, the necessary action was taken to help NaSyah work through her mental/emotional challenges and improve academically. Hilary says things like meeting regularly with a psychologist at Lurie Children’s and having a more tailored plan for the classroom made all the difference.

“Lurie Children’s offers a holistic approach to care, and once those supports were in place, NaSyah’s overall mood completely shifted. Socially, she’s doing a whole lot better, and she’s gotten her confidence back,” Hilary said.

NaSyah’s confidence continued to grow when she decided to join The Fontan Choir in 2024: a collaborative feasibility study led by Lurie Children’s and Northwestern University Bienen School of Music to assess how singing and breathwork might enhance both the physical health and psychological well-being of young patients who have undergone multiple open-heart surgeries. One being the Fontan procedure — the third and final surgery in a staged surgical approach for managing single-ventricle defects.

“I really feel like her meeting other kids like her [in the choir], alleviated that feeling of loneliness. Once she knew she wasn’t the only one, it was like ‘okay, I got this,’” Hilary said.

Despite all that NaSyah has been through at now 14 years old, she brightens up the room with her humor, which has helped her cope with tough times. In addition to playing hard, as Hilary says, she also fights hard.

Today NaSyah is able to keep up with her friends and loves reading and being creative through art. Hilary is so proud of her and feels overwhelmed with emotion watching her be a teen, just like her peers.

“This is the closest feeling to heaven. Just that we get to enjoy each other in this way, without all the things that kept us up at night worrying about,” Hilary said. “We used to anticipate the worst and having overcome all of that – this is literally heaven. I’m thankful every day.”

Hilary and NaSyah also feel particularly grateful for providers like Michelle Steltzer, APRN-NP, Single Ventricle Center of Excellence. “She’s so thorough, understanding and patient. You can tell she really cares. We’ve been through a lot, and when you come across people like her, it’s a godsend. I can’t tell you how grateful and thankful I am that we ended up at Lurie Children’s. It was an unexpected blessing.”