For many, Valentine’s Day is a day to celebrate love. For Jesse Smith, the day holds a different meaning. You can usually find her running a race, or sharing her family’s story to raise awareness for a cause that’s near and dear to her heart – her son’s heart.
Smith was shocked the first time she heard one in 110 babies are born with a heart defect. She didn’t know of anyone who had a child with a heart defect, until she was carrying a child with one. The day Smith and her husband were told they were having a baby boy, they also found out there was something wrong with his heart.
“It was devastating, especially because we truly thought we were simply finding out the baby’s sex that day. It was one of those moments that change you forever,” said Smith.
There wasn’t much information their midwife could give them, so they left their appointment without knowing what their son would face. Thankfully, they didn’t have to live with that unknown for long. The cardiologist they had been referred to had a cancellation that afternoon and was able to meet with them.
He diagrammed Luke’s unique heart. It turned out, Luke wasn’t one in 110. His condition is much more rare.
“Luke has a condition generally referred to as single ventricle anatomy,” said Dr. Agustin Rubio, Luke’s cardiologist at Seattle Children’s. “Single ventricle heart disease represents approximately 7.7% of all congenital heart diseases diagnosed in childhood and has a birth incidence of approximately four to eight per 10,000 live births.”
Born with only one functional ventricle, the cardiologist told Smith her son would need multiple open heart surgeries during his childhood, but he also affirmed that children like Luke can live long, full lives.
“We clung to that hope over the next weeks as we processed what was to come,” said Smith. “I hungrily searched for other families that had similar experiences and cried with joy when I saw young children playing and laughing despite their serious heart conditions. The greatest gift in times like these is hope.”
It was that faith that helped them through the hard times.
A very special child
Today, 11-year-old Luke is doing well, but his journey hasn’t been without medical complexity. To date, he’s undergone four open heart surgeries. When Luke was born, he was treated by a cardiologist in Tacoma who recommended his surgical care take place at Seattle Children’s Heart Center, one of the best cardiology programs in the U.S. The family traveled to Seattle often, and eventually transferred Luke’s care entirely to Seattle Children’s Heart Center.
“Seattle Children’s Heart Center exists to give kids like Luke an abundant, fulfilling, and purposeful life,” said Smith. “Without the research, technology, and high level of care that defines the Heart Center, my son would not be thriving as he is.”
For Luke and his family, the hospital became like a second home, and their care team became an extension of their family. Together, they’ve advocated for Luke and other children with heart conditions.
“It is critical that people are aware of the prevalence and seriousness of heart defects so that more attention, money and time will be given to this cause. Because these kiddos’ scars are beneath their shirts, most of the time you would never know what they’ve been through or that their heart condition is a life-long battle.”
Finding an unlikely friend
While undergoing his fourth open heart surgery, Luke forged an unlikely friendship. Like Smith, Austin Davis, quarterback for the Seattle Seahawks, also has a cause that’s important to him. He wants to help people in need and make a difference in the world.
The pair first met at Seattle Children’s while Luke was recovering from his fourth open heart surgery in October. Davis was visiting patients with Russell Wilson, who regularly makes trips to the hospital.
During week 13 of the National Football League (NFL), players were given the opportunity to showcase custom-made cleats on the field to support an initiative called My Cause My Cleats. Davis had an idea. He wanted a patient at Seattle Children’s to design his cleats with him. As soon as Davis walked into Luke’s hospital room, the two connected. He asked Luke if he’d like to help him with the design process.
“I want to make an impact in the lives of others,” said Davis. “If I can help a kid like Luke, that’s all that matters. I hope we’ll be friends for a really long time.”
According to Smith, that day meant the world to Luke.
“Helping Austin design a pair of cleats and then seeing those cleats come to life was by far the highlight of Luke’s hospitalization,” said Smith. “I would imagine it might be hard to step into a patient’s room, not knowing how sick the child is, and Austin was just a class act from the second he walked in. He made a connection with Luke and they have stayed connected since that initial meeting.”
Luke and Davis continue to keep in touch. They’ve even played video games together at Luke’s home. For Davis, being a professional athlete is about more than the limelight.
“As athletes, we do a lot in the community,” said Davis. “We’re in the public eye. But to me, making a real difference doesn’t mean doing something when cameras are around. I want kids like Luke to know they are important and that they matter, every day.”
After recovering from his surgery, Luke was able to see the cleats he designed in action at CenturyLink Field. With the help from Davis’ friend, Dave Ross, Luke got to attend the Sunday night game.
“It was magical,” said Smith. “It was remarkable and a memory that will be treasured.”
After the game, Davis met up with Luke and had another surprise in store for him – one of his cleats, and a hand-written letter, which is now framed and proudly displayed in his room above his bed. The other cleat was put up for auction to benefit Seattle Children’s Heart Center.
“I hope Austin knows how meaningful the gifts of his time and talent are to children like Luke who are battling through medical challenges,” said Smith. “An experience like that can’t take away everything Luke has gone through with his heart defect, but it absolutely imprints on a child that good can come from hardship. There is always beauty and hope and kindness to be found – especially in the middle of trials. Luke left that game knowing he was cared for on a new level and for that, we will always be grateful.”
Luke’s outlook is bright. Today, he’s more than three months out from his fourth open heart surgery. The recovery was fairly difficult for him, both physically and emotionally, but according to Smith, they are starting to see the sparkle in Luke’s eyes again. And gone are the days of windedness at the top of their stairs.
“His heart disease brings challenges, yet with the help of everyone around him – mom and dad, his pediatrician, the Seattle Children’s Heart team – he will succeed,” said Rubio. “It takes a village to raise any child. Our village will be here for him and countless others just like him.”
Smith says at some point, Luke will most likely need a heart transplant, but that could be a couple decades down the road. Until then, Luke will keep embracing life, one day at a time, with a heart that’s one-of-a-kind.
For families struggling with a similar diagnosis, Smith offers words of support.
“Keep fighting, advocating, asking questions and cheering on your child,” said Smith. “And let them know this defect doesn’t define them. They are so much more than their heart defect. A young man with Luke’s identical defect just recently ran the Boston Marathon with his dad. I showed Luke the article and photos and reminded him that he is not his heart defect. He is so much more and his story, although hard at times, matters.”
This Valentine’s Day, Smith will continue to raise awareness for heart defects. She hopes her family’s journey will inspire you, but most importantly, make you an advocate for children like her son.
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It Starts With Yes: The Campaign for Seattle Children’s is a $1 billion initiative with a bold vision to transform children’s health. With your help, we will continue to provide financial assistance for families in need; expand necessary healthcare and research facilities; and invest in clinical and research programs to advance pediatric medicine. Learn more or It Starts With Yes to improve how we care for kids like Luke and transform childhood health for generations to come.