Oakes Ortyl was 20 weeks along, in his mother’s belly, when doctors noticed an irregularity in his heart.
The diagnosis: truncus arteriosus. It meant he had only one major valve exiting his heart instead of two, as well as missing portions of the wall that separates the two lower chambers. The result is a deadly mix of oxygen-poor blood. There is no known cause; baby Oakes was likely conceived with the disease.
“While we were waiting on a lung transplant, we were told that he would pass,” said the boy’s mother, Becky Fox Ortyl. “We were told we would bury our son. It was just a matter of time.”
But before he moved on, he had gifts to give.
Meaning Amidst the Struggle
Oakes Lee Ortyl was born March 10, 2011. Ten tiny fingers surrounding tiny hands, little toes wiggling...everything most healthy little boys are born with. Except for his heart.
By the time he turned two months old, he had endured two open heart surgeries. At four months he would have a lung transplant, a rarity among infants. He endured enough to make grown men crumble, but the tiny baby only knew love.
“He needed that critical care, but there were months where he was really doing great,” Becky said. “There were big windows where he was rocking it. Beating the odds.”
Home wasn’t an option. Over the course of a year and a half, Oakes would get to spend exactly 18 days in his home. The rest were spent in a hospital, with his family nearby round the clock.
For Becky and her husband Greg, a tireless effort was underway to maintain as much normalcy as possible for their daughter, two year old Isla. They stayed by Oakes’ side in shifts, Becky during the day while Greg worked, a brief dinner together as a family, then Greg would head to the hospital.
“Finances weren’t a concern, and we had friends and family lining up to offer food, laundry, money, anything we needed. More than we anticipated,” Becky said.
Though Greg’s insurance was sufficient, and his job understanding of the situation, a hospital financial advisor suggested they hold a fundraiser for emergency funds. They needed to come up with $20,000 to $30,000.
And thus came one of Oakes’ first gifts.
“A few friends just took the fundraiser and ran with it,” Becky said. “They organized a silent auction and golf tournament...and they raised over $100,000 for us.”
Unbeknownst to the Ortyls at the time,100% of those funds would eventually be distributed to others.
Growing Through Giving
With so much time spent waiting outside the ICU, the Ortyls developed a community with other families who were fighting alongside sick babies. Other families struggling to find meaning and normalcy in the midst of crisis.
Fighting congenital heart disease can cost millions of dollars. While insurance does cover a good portion of that for most families, they still struggle to meet even simple needs, like paying rent or buying groceries. Some families don’t live near the hospitals their children are being treated at, so they have to stay in hotels, where costs snowball very quickly.
“We knew we wouldn’t need that money as bad as some of the families in ICU, so we started a foundation,” Becky said. “Within months we had applications coming in.”
The St Louis Children’s Hospital social workers helped evaluate applicants, and while Oakes was still fighting for every breath, confined to a crib with tubes and wires going every which way, he was changing lives across the country. Through the newly-minted Mighty Oakes Heart Foundation.
“Before Oakes, we weren’t that kind of family at all,” Becky said. “We cut a couple checks to charities we weren’t really connected to, but it felt right.
“Oakes just catapulted us in a completely different direction. This wasn’t my plan.”
The dramatic shift for the Ortyl family was another of Oakes’ countless gifts.
The Ortyls were frequently told that the end was near, that Oakes wouldn’t make it through the night.
“But he always did, he’d wake up smiling like, ‘Hey, what’s going on guys?’” Becky said.
Eventually he seemed to hit a wall, and he bounced back weaker every time. The smiles and bursts of energy became less frequent.
It was time.
“We were asked to come in for a ‘care conference,’ and we knew this conversation was coming,” Becky recalled. “We thought it would a couple of his doctors, to tell us it was over. But there were at least twenty people in the room.”
It was nurses, ICU doctors, cardiologists, pulmonologists...basically everyone who had come into contact with the little boy named Oakes. Somber but straightforward, the group told them what they’d feared: all options were exhausted, and Oakes was going to die. It was time to let him go.
“It was every parent’s nightmare: we’re learning that our son is going to die,” Becky said. “And we’re going to have make decisions on how, and it was just horrible.”
Once that news was delivered, the doctors and nurses shed the professional airs and became extraordinarily human.
“These were very professional, brilliant doctors from all over the world, who had been amazing caregivers but a little standoffish. Friendly, but still professional,” Becky said.
“They all started tearing up, and told us how much they loved Oakes, how much they loved us, how they were devastated.
“Someone in the room said, ‘I don’t know how Oakes did it, I don’t know how he lived so long, got through everything he got through.’”
In response, one of the chief physicians at the hospital, a stern, quiet man spoke up.
“I know why he lived this long,” the doctor said. “He lived this long because you guys showed up every day and loved him like crazy. You gave him every reason to fight. His life, according to him, was pretty great.”
“That’s the core of why we do what we do,” Becky concluded. “If we can help the family relax and sit at their kid’s bedside, focus on that kid, love on that kid and give them every reason to fight, then I feel like we are saving the world.”
Oakes died gently, in the arms of his loving family, on June 6, 2012. Ten tiny fingers went still, as did ten little toes.
But sometimes tiny splashes produce big waves, and Oakes’ life continues to impact those of his family and hundreds of families across the nation.
The Oakes Legacy
One in 100 children are born with congenital heart defects. 70% of those won’t be diagnosed before birth. Most of the time the families are completely unprepared to stay in the hospital for months, or bring home a child with an oxygen tank and other special equipment.
And there are many of these families. More children die each year from congenital heart defects that all pediatric cancers combined. It’s the number one cause of death in children throughout the world, but is grossly underfunded in comparison to other children’s health issues. But Oakes and his family are doing what they can to raise awareness.
In just two years, Mighty Oakes Heart Foundation has raised over $500,000 dollars, and helped hundreds of families get through some of the most trying times in their lives.
Today, Becky is pregnant with the third Ortyl child. Isla is 4.5 years old, and looking forward to her new sibling, as well as missing her brother.
“He’s been gone for over a year and a half, and I still can’t wrap my brain around it,” Becky said. But life is good, she says.
Word of Mighty Oakes Heart Foundation made it all the way to us here at American Mothers, and one of our members nominated Becky for Young Mother of the Year in 2013, an honor she carries for the state of Missouri. We’re glad to have her as part of our organization, and today we’re honored to be able to tell her story.
Oakes is gone, but his gifts are still going strong.
Mighty Oakes Foundation seeks to help families with children battling congenital heart defects, and other cardiac issues. Besides financial contributions to these families, the foundation also sponsors a special summer camp for children (alongside high school and college age kids) suffering from heart defects.
This holiday season, hundreds of families are living the same nightmare as the Ortyls, watching their babies suffer and struggle to survive circumstances, the only thing they’ve known in their lives. If you’re looking for a cause to support, you can help extend Oakes’ gift to the world by working with Mighty Oakes Heart Foundation.
Click here to learn more about their events, or to just send over a donation.