A Heart Warming Story

A local teen with a congenital heart condition is surprised with a VIP Bears Experience

By Valerie Hardy

O’Neill Middle School eighth-grader Jonah Davis was born with only half a functioning heart, but he is a wholehearted football fan. However, Jonah cannot play football or other contact sports because of his critical congenital heart condition: Hypoplastic Left Heart Syndrome (HLHS).

Jonah’s mom, Stacie, a nurse, explained that “the left side of his heart, the left ventricle, the left pumping chamber of his heart didn’t develop.”

HLHS prevents Jonah’s heart from pumping blood effectively. Stacie said, “There are so many congenital heart defects, and Jonah’s is considered the most severe.”

When Stacie was pregnant with Jonah, HLHS was widely considered “incompatible with life,” she explained. “There was not a lot of research to show kids with the condition having a successful life past early childhood.”

So, after receiving Jonah’s in-utero diagnosis and the grave prognosis, based on the information available, Stacie and her husband, Rob, made the unimaginable decision to medically terminate the pregnancy.

On the day of the procedure, Stacie, Rob, and Stacie’s mother and sister were sitting in the waiting room. Stacie was overwhelmed by emotions: fear about potential medical debt, sorrow over the seeming lack of long-term viability of the baby, and devastation regarding having to decide whether to go forward with the termination. She said, “As Christians who have a huge faith in healing and miracles…we were just praying and believing that we didn’t have to make the decision.”

Then her mom’s phone began “ringing, ringing, ringing, and didn’t go to voicemail,” Stacie recounted. Her mom finally answered the phone, then – bawling – handed it to Stacie, saying, “It’s for you.”

On the other end of the line was a man who introduced himself by first name and asked, “Does anyone there need a prayer?” Stacie said he offered encouraging words and said, “You don’t have to do this.”

The Davises viewed the call as a sign, a “phone call from heaven,” Stacie said and immediately left. Within a day of opting out of the termination, they encountered what Stacie calls their “earth angels”: the Advocate Health Care team that has treated Jonah since birth.

The Davises attended an open house, which included a celebration of Dr. Michel Ilbawi, a surgeon doing cardiovascular surgeries, like the one their baby would need, at Christ Hospital in Oak Lawn. “I remember being in this big auditorium, and the doctor was speaking. Then the lights went on, and we were like, ‘This is our guy!’”

During their initial appointment with Dr. Ilbawi, their first impression was validated. “He was so kind, so genuine,” Stacie said.

Dr. Ilbawi alleviated their financial worries, given the level of care Jonah would require, and assured them that Jonah would be in good hands. When Jonah was born and had to undergo open-heart surgery three days later, “it was like handing him off to my grandpa,” Stacie fondly said.

Jonah had two additional open-heart surgeries before age 3, but today he is thriving, largely due to ongoing care from his Advocate Health Care providers. Jonah is also a “big part of HLHS research,” Stacie said. “He’s the story for really awesome outcomes,” a story that would have comforted the Davises upon first learning Jonah’s diagnosis 15 years ago.
Jonah has been through a lot, but he does not dwell on that. In fact, it’s just the opposite. “He’s a champ!” Stacie said. “He’s so easy, so mellow, has a super optimistic outlook.”

Based on Jonah’s medical challenges, resilience through them, positive attitude – oh, and love of football! – one of his longtime doctors nominated him for the experience of a lifetime: an all-expenses-paid VIP trip to Phoenix – courtesy of the Chicago Bears in partnership with Advocate Health – for him and his family to watch the Bears play the Arizona Cardinals on Nov. 3. The experience also included a pre-trip visit to Halas Hall, private meet-and-greets with Bears players and coaches, and a seemingly endless supply of Bears swag.

Tight end Cole Kmet was among the Bears representatives who delivered the exciting news at one of Jonah’s favorite hangouts: Mark’s Card Shop in downtown Downers Grove. Even Staley, the team’s official mascot, was there for the surprise reveal. Jonah was gifted jerseys and other signed Bears apparel, and they made him his own trading cards, which he exchanged with some Bears players over the course of the multi-day experience.

Come game day, the Davises were granted on-field access. Davis was captured on video, enthusiastically saying, “I’m on the field. Are you kidding me?”

Jonah thought it was “crazy” that he was selected for the experience and said it was “filled with surprise after surprise.”

Stacie noted that Jonah “knows Advocate takes care of thousands of other kids, so for him to be selected was really special.”

February marks American Heart Month, which aims to promote healthy living and raise funds for heart health, issues near and dear to the Davises’ hearts. In fact, Jonah was annually the top fundraiser in the American Heart Association’s Kids Heart Challenge at Hillcrest Elementary School, often raising over $2,000. “It was something he would get really excited and competitive about, asking to record videos and posting on social media for donations,” Stacie said.

Since Jonah moved on to middle school, his sister, Stella, a fifth grader, is keeping the family’s eight-year streak as the school’s top fundraiser alive, a tribute to her brother and all he has endured living with HLHS.

Despite his heart condition, Jonah stays active. Among his favorite activities are riding his bike with friends and playing basketball and flag football. He wants kids with similar congenital heart defects to know that, even if they are restricted from playing contact sports, “there are so many ways to be involved in other sports and activities.”