In the frenzy that is Super Bowl week, John Spytek, the Tampa Bay Buccaneers' director of player personnel, doesn't have to go far to find his peace.
"I have a tattoo over my heart of her -- the sound waves of her left [heart] track -- and, you know, in crazy moments I'll just touch it and close my eyes and can kind of hear her laugh and it's a very calming couple seconds for me," Spytek told ABC News, referring to his late daughter, Evelyn Grace Spytek. "She's an amazing kid and I'm just grateful that we had her."
Evelyn died in 2014 at just 21 months old. She died following complications from surgery after she was born with cytomegalovirus infection, or congenital CMV, a type of virus.
While most babies with congenital CMV do not show signs of health problems, some do at birth or develop problems later, according to the U.S. Centers for Disease Control and Prevention.
In Evelyn's case, prenatal scans showed her growth not progressing and an echogenic bowel, an unusually bright appearance of the bowel on an ultrasound, but doctors did not discuss CMV, according to Spytek.
When Spytek's wife, Kristen Spytek, experienced sinus infection-like symptoms during the pregnancy, she looked online for answers and read about CMV, a common virus for people of all ages, but was not diagnosed, according to the couple.
Evelyn was fairly quickly diagnosed with congenital CMV though when she was born at 36 weeks, weighing 3 pounds, 14 ounces.
"The neonatologist whisked her away and he was the one that ultimately said, 'I think this is CMV,'" said Kristen Spytek, noting that Evelyn was "very severely" affected by the virus at birth.
Evelyn was eventually diagnosed with epilepsy, cerebral palsy, hearing loss and vision loss. She died on Dec. 26, 2014.
"It's a very, very tragic and sad way we lost her," said John Spytek. "Within 24 hours it was everything was good, and then she was gone."
Faced with the loss of their first-born child, the Spyteks turned their grief into action, forming the National CMV Foundation, a nonprofit that works to educate women about congenital CMV and fund research for congenital CMV education, diagnosis, screening, treatment and vaccine development, according to its website.
"My ultimate goal is for women to feel empowered about their health, to ask their doctors questions about CMV, and for the doctors to have the knowledge to properly counsel back," said Kristen Spytek, who serves as the foundation's president.
Pregnant people can pass CMV to their developing baby during pregnancy. And because young children are a common source of CMV, people who are in frequent contact with young children may be at greater risk of infection, according to the CDC.
"Cytomegalovirus is transmitted by close contact with mucosal fluids, such as urine and saliva, from an infected person, often a toddler who can be frequently infected from each other or via breastfeeding, and shed large amounts of virus that can then infect adult caretakers, including pregnant women," said Dr. Sallie Permar, pediatrician-in-chief at New York-Presbyterian Komansky Children's Hospital and Weill Cornell Medicine and a board member of the National CMV Foundation.
About 1 out of every 200 babies is born with congenital CMV, and about 1 out of 5 of those babies will have birth defects or other long-term health problems, according to the CDC.
With the support of the National CMV Foundation, researchers at Moderna are currently in phase 3 trials for a vaccine for congenital CMV, according to Kristen Spytek. The recruitment phase of the vaccine effort was put on pause last year while Moderna created a COVID-19 vaccine.
The foundation is also pushing for CMV to be part of the universal newborn screening process because babies with the virus are often asymptomatic.
"A new CMV infection is most often asymptomatic, but can have mono-like symptoms, including fever, sore throat and swollen lymph nodes," said Permar. "Individuals can also be reinfected throughout life, indicating that natural immunity is not completely protective, which has complicated vaccine development."
The Spyteks found a huge support system for their work on congenital CMV when John Spytek joined the Buccaneers organization five years ago.
The team's general manager, owner, front office staff and two players, Ali Marpet and Alex Cappa, all chose to fundraise for the National CMV Foundation during the NFL's "My Cause, My Cleats" initiative.
When the family, which includes "football-obsessed" Jack, 6, and Tommy, 4, watches the Bucs face the Kansas City Chiefs in the Super Bowl on Sunday in Tampa, they say Evelyn will be there with them too.
"In these big moments, she grounds us, and a lot of ways I think she brings us a really unique perspective," said John Spytek.
