TAMPA, Fla. -- One foot in front of the other, one step at a time, just keep going – that’s how Tampa Bay Buccaneers vice president of player personnel John Spytek powered through his deepest pain and processed his debilitating grief -- by slipping on a pair of running shoes at 4:30 every morning and thinking of his little girl.
“I think about her a lot, when it gets hard,” said Spytek, now in his sixth season with the Buccaneers and 18th in the NFL. “I have a tattoo of her on my chest, and I just kind of touch it … I look up at the sky. I always feel like with some of the harder runs … it’s a spiritual connection. She’s kind of present, in that moment with me.”
Her name was Evelyn Grace, and she’d be almost 9 years old today. He’ll blow kisses towards the sky at her Sunday when he crosses the finish line at the New York City Marathon -- a race he can participate in because of the team’s Week 9 bye. He will run in her honor at 9:55 a.m., along with seven teammates, to raise money and awareness for the National CMV Foundation that he and his wife Kristen started.
Also known as cytomegalovirus, CMV belongs to the same family of viruses as the chickenpox, herpes simplex and mononucleosis and is transmitted via saliva and bodily fluids. It is the leading cause of viral birth defects in the United States. It affects one in 150-200 babies, with one in five facing lifelong health problems.
While common among healthy people -- 50-80% of adults have had CMV by age 40, which presents as cold and flu-like symptoms -- it can lead to devastating consequences for pregnant women and their unborn children. That’s what happened with Evelyn, who died seven years ago next month.
“I just think about ... her hardest moments were much harder than my hardest moments,” said Spytek, who has raised $25,000 for the race, with many donations coming from his Buccaneers coworkers.
“It’s really humbling to have all their support. It’s not like the most common thing.”
‘Nobody ever mentioned it could be an infectious disease’
Spytek was working as director of college scouting with the Cleveland Browns when Kristen was 34 weeks pregnant. The Spyteks were at a routine ultrasound for their first-born when doctors noticed their baby’s bowel was higher than normal, an indicator of possible birth defects. Genetic screening provided no answers.
“Nobody ever mentioned to me that it could be an infectious disease of any kind,” Kristen said.
The only time Kristen had ever even heard of CMV was doing a Google search. It wasn’t until their daughter was born two weeks later, weighing 3 pounds and 14 ounces, that they had a diagnosis: congenital CMV.
Evelyn was deaf in both ears, her vision was significantly compromised and she had epilepsy, causing her to suffer from seizures. She also had microcephaly, meaning her head was smaller than expected.
The Spyteks were overwhelmed. There was no case manager and no support team ready. Not to mention, Spytek lost his job two months later.
“I think there’s two kinds of people in a traumatic situation,” Kristen said. “She, for us, was very motivating, because she was depending on [us]. So we both sprang into action immediately.”
Evelyn had sparkly brown eyes and an intoxicating laugh, so much so that Spytek’s tattoo is actually the soundwaves of her laugh.
“This child -- where everything is hard, everything is tough -- she may have had seizures two hours ago and now she’s laughing uncontrollably and nobody knows why -- it’s just very healing,” Spytek said.
Evelyn wore an owl costume her last Halloween. Because her other senses were compromised, she had a heightened sense of touch. She loved to cuddle. And she loved being outdoors.
“She loved the wind. She could feel the warmth on her face when you took her outside,” Spytek said. “She was always happy outside.”
A cochlear implant gave Evelyn the gift of hearing their voices for the first time, something they will cherish forever. But complications arose from another surgery -- the insertion of a gastrostomy tube for stomach feeding -- and she died Dec. 26, 2014.
“We never pictured having a baby that had the challenges she had,” Spytek said. “Even though we had become aware of the fragility of life -- we knew she wasn’t long for this world -- it just never occurred to us in that moment that we would never put her to bed again.”
Some babies born with CMV won’t show any symptoms, but down the road, they can suffer hearing loss. Making CMV testing part of the routine heel stick test for infants -- something the Spyteks and their foundation are fighting for -- would detect about 85% of congenital CMV cases, although saliva testing would provide greater accuracy.
If a newborn tests positive, he or she can receive early intervention services, and be placed on antivirals to stop the virus’ progression if symptomatic. They are also fighting to be part of the newborn hearing screening in hospitals.
There is also prevention and education. Women who work around children, such as preschool teachers and daycare workers who feed children and change diapers, are at increased risk, as are parents who share utensils with their children.
The pharmaceutical company Moderna, who, along with Pfizer, developed a COVID-19 vaccine using mRNA technology, just began a Phase 3 clinical trial for a vaccine for CMV. The vaccine was developed prior to the COVID-19 pandemic, but the trial was put on hold because of it.
The mRNA profile of the CMV vaccine has the same safety profile as the COVID-19 vaccine, and if it proves effective they will get clearance in the next few years.
“mRNA, the vaccine talk, is really gonna push our conversation forward,” Kristen said. “Moderna is now a household name.”
‘She lives amongst the stars’
Three weeks after Evelyn took her last breath, Kristen gave birth to a healthy baby boy named Jack, now 7.
“He’s a savior in a lot of ways,” Spytek said. “I don’t know if he’ll ever understand -- even though we’re gonna tell him at some point -- what he’s meant to our lives because of how he came into it.”
Their other son, Thomas, is 4. The boys know they had an older sister.
“We say, ‘She lives amongst the stars,’ and we’ll celebrate her various milestones like her birthday and the day she died, and on holidays and things, we’ll do a little tribute to her,” Kristen said.
They have a sign hanging in their home that says, “Life is better when you’re laughing.”
But holidays are still particularly difficult. The boys’ excitement helps bring their family joy and helps them stay present, as did winning the Super Bowl with the Denver Broncos after the 2016 season and with the Bucs in February.
“We knew she was looking down at us and watching and proud of him,” Kristen said. “It was just really incredible.”
‘You have to keep going’
Spytek’s goal for Sunday is to run the race in three hours and 45 minutes. It will be his third. He ran the Seattle Marathon in Seattle, Washington in 3:49. He ran Grandma’s Marathon in Duluth, Minnesota in 3:36. He’s trained for this one for 15 weeks.
He’s not sure when he’ll hit the dreaded wall. It happened at mile 22 in Seattle in June of 2014. His legs felt like they were going to give out. But then Kristen appeared, holding Evelyn, and he pushed through four more.
“When it gets hard, you realize how hard her life was. And that was her forever,” Spytek said. “Every moment she spent here was hard. And this for me, is very temporary.”
Running has been therapy for him. But there is still grief and a void in their hearts that will never truly be filled.
“You have to keep going,” Spytek said. “I remember being mad at people after we lost her like, ‘How can you get back to your life? How can you keep going?’ But then we realized it’s really the only choice you have. You have to make that first conscious decision.”
“It kind of hits you in the face a little bit and you’ve gotta just lean into it and let it happen,” Kristen added. “Because if you kind of push it away, it’s not gonna be good for you long term. But it’s less frequent now than it maybe was then. Even the things that I always thought would be troublesome, like her birthday -- it’s more like the days leading up to it or the simple moments, of just driving around in the car and having a flashback or a memory -- that’s the stuff that takes my breath away.”
Spytek remembers a post he saw on a website that illustrates how grief really does come in waves -- you feel like you’re drowning in it, but eventually you learn to ride it out -- but come Sunday, it’ll be in the form of 26.2 miles.
He’ll do it for Evelyn and babies born like her, though, honoring their strength and fighting spirit. Perhaps she’ll give him a little sign when the sun gently peeks through the clouds, or a nudge when the autumn breeze hits his cheek.
“The end of the marathon -- the one step in front of the other -- is a great a metaphor for life, and the harder moments,” Spytek said. “‘Just keep going. Keep going. There’s better days and better things ahead.”