20 hours Ago
When John Spytek introduced his wife and two young sons at his Las Vegas Raiders introductory news conference last month, the team’s new general manager called his wife, Kristen, his “rock.” “You’re going to see my wife around a lot,” he said. “She is going to be a big pillar in this community.
” There are a lot of empty words at these types of proceedings, but those were not. The Spyteks are co-founders of the National CMV Foundation , which they started after their daughter, Evelyn, died in 2014 at just 21 months old. She was born with a cytomegalovirus infection, or congenital CMV, and died following complications from surgery.
Advertisement CMV leads to more birth defects in the country than any other virus, according to the Centers for Disease Control and Prevention, and yet many are still unaware of its potential damages. That’s something the Spyteks hope to attack in the Las Vegas market, just as they did in their previous stops at Tampa Bay and Denver. “It’s more common than people think, and women and families have a right to know about CMV,” Kristen Spytek said.
The foundation has grown in size and reach, becoming a national resource for families while raising money for research, diagnosis, screening, treatment and vaccine development. No such thing existed when Kristen was pregnant with her first child, when prenatal scans not only showed that Evelyn wasn’t growing as expected but that her bowel appeared unusually bright on an ultrasound. “We went in for the 19-week scan to find out if we were having a boy or a girl, and I can still remember the ultrasound technician quietly leaving the room and the doctor coming in and saying there were problems,” John Spytek said.
Doctors did not mention CMV, or that it could be an infectious disease of any kind. Kristen, who had developed sinus-like symptoms, was left to search the internet as the list of all the problems that Evelyn was facing — the bright bowel, a small head as well as heart concerns — grew as she reached 32 weeks of pregnancy. “And Google spit out CMV at us,’” John said.
“And we read about it and it was just horrible. And we were like, ‘That can’t be what it is or they would have told us.’ But that’s what it was.
” Evelyn was born at 36 weeks, weighing 3 pounds, 14 ounces, and within 15 minutes a neonatologist told the Spyteks that he thought she had CMV. “They confirmed it 24 hours later and by that point, there is nothing you can do about it,” John said. “Now, the science has advanced where if you could diagnose this in utero, you can actually do a blood transfusion and some other treatments to try and save the child.
” John has a tattoo of the sound waves of Evelyn’s heartbeat over his heart, and at times he will touch it and hear his daughter’s laugh. It’s a calming moment in what has been a tough and now rewarding process to educate people about CMV. “It’s preventable, is what we keep talking about,” he said.
Evelyn was eventually diagnosed with epilepsy, cerebral palsy, hearing loss and vision loss. She died on Dec. 26, 2014, after the Spyteks had started the foundation because they felt that she and other babies and families were depending on them to learn about CMV and spread the word.
Advertisement “The goal was to eradicate CMV in totality, and it turned out to be a pretty out-over-our-skis goal with how little CMV was talked about,” John said. “So we wanted to raise awareness for expectant moms and families so that they don’t have to go through what we did. And so that their children don’t have to go through what Evelyn did, more importantly.
” Cytomegalovirus is a member of the herpes virus family and, according to the CDC, between 50 and 80 percent of people in the United States have had a CMV infection by the time they are 40 years old. A CMV infection causes cold-like symptoms, such as a sore throat, fever, fatigue and swollen glands, but can also cause severe disease in babies who are infected with CMV before birth. About one out of every 200 babies is born with congenital CMV and, according to the CDC, about one out of five of those babies will have birth defects or other long-term health problems.
Kristen, who has since given birth to sons Jack, 11, and Tommy, 8, has a marketing background and went to work right away to help create awareness. “I wanted to set up a place for people like me — parents, caregivers and family members — to go and find information about this that was educational and informative,” she said. “Not too scary, but geared towards prevention for families.
” Some babies born with CMV don’t show signs of it at birth and develop problems later, according to the CDC. “We have been pushing for things such as research funding at the federal level, congressional bills and newborn screening,” Kristen said. “A lot of babies are born without abnormalities or issues and then go on to have conditions such as hearing loss or epilepsy.
” Moderna has been working on a vaccine for CMV, and says the testing is currently in Phase 3 . “There is still a ways to go,” John said. “You learn that there is no quick fix to this and it’s going to take years before people maybe don’t get CMV anymore, but we’re making progress.
” Advertisement There is also a need for prevention 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. One of the foundation’s goal is to get CMV placed on the Recommended Uniform Screen Panel (RUSP), a list of disorders recommended to be screened for as part of universal newborn screening programs.
“That would require everyone to be fully aware of it,” John said of inclusion on the RUSP list, “and it would require doctors to educate the soon-to-be moms about the dangers of CMV and how you prevent it. It would shine a light on something that is a really big problem that people don’t know exists. “People would be shocked how many kids are born with it every year.
” The foundation started with six members — family members and friends of the Spyteks — as an all-volunteer grass-roots group, and now has 11 board of directors members and four employees. “We’ve raised a half-million dollars in our best years, but we still have a long way to go,” John said. “We connect families regionally and state-wide, as well as with specialists,” Kristen said.
“And we create a safe space online and elsewhere for these families to engage and support one another.” And more and more future parents are learning about that space. John worked for the Tampa Bay Buccaneers for the last nine years, and several members of the organization — including players — wore CMV-logo adorned cleats as part of the NFL’s annual “My Cause, My Cleats” initiative, including for last season’s game against the Raiders.
We would like to thank the @bucaneers staff and @nfloncbs for supporting the National CMV Foundation during yesterday's #MYCauseMyCleats game against the @raiders . Stay tuned for details about the upcoming shoe auction! #StopCMV #GoBucs pic.twitter.
com/N1YfAj6Ok4 — National CMV (@NationalCMV) December 9, 2024 “It creates awareness that we can’t get anywhere else,” John said. “CBS did a 30-second camera shot of it and talked about CMV. And also, the energy that something like that gives to the base of our foundation and the parents that are in it every day .
.. it’s astounding.
They get so motivated. “Finally, people are paying attention to us. Finally, the message is getting out.
” (Top photos of John and Kristen Spytek with their late daughter Evelyn: Courtesy of Kristen Spytek).
