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Family of Bucs executive raises awareness of CMV birth defect

TAMPA — John Spytek was a linebacker at Michigan. He knows what it's like to play with pain.

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As the Cleveland Browns' director of college scouting, he drafted six players who made the All-Rookie team. He can identify greatness.

For the past few months, he has arrived and left work in the dark, spending hours in meetings evaluating prospects as the Tampa Bay Buccaneers' new director of player personnel. His understands discipline and persistence.

But the toughest person he ever met weighed 3 pounds, 14 ounces at birth.

She was profoundly deaf in both ears, had compromised vision and microcephaly— the birth defect everyone now associates with the Zika virus.

She was his daughter, Evelyn, who rarely cried, had a smile as wide as a slice of cantaloupe and a laugh that always made you laugh back.

"She was the happiest," said Spytek, 35. "I can't imagine me sitting around and feeling sorry for myself after watching what she went through every day."

Evelyn was born in March 2013 with congenital cytomegalovirus, or CMV. If you haven't heard of it, or are not aware that it is the leading cause of viral birth defects in the United States, you're not alone. And that's really the problem.

Spytek's wife, Kristen, found CMV on Google during her pregnancy, shortly after a routine ultrasound at 34 weeks, when doctors noticed Evelyn's fetal bowel was brighter than normal. In most cases, it's not a problem, but doctors evaluate for potential birth defects.

"Doctors tell you don't read a lot on the Internet," Kristen said. "A lot of babies also have this indicator and are born perfectly healthy. Evelyn was born two weeks later, so I had kind of forgotten about it."

But sometime during her pregnancy, Kristen had been infected with CMV for the first time. It isn't much more damaging than a cold to the general population. Between 50 and 80 percent of people in the United States have had a CMV infection before age 40. Once CMV is in a person's body, it stays there for life.

But 40 percent of women infected with CMV the first time while pregnant pass it along to their babies. One in 150 are born with congenital CMV and more than 5,000 each year suffer problems, most commonly, hearing loss.

"We knew something was wrong right away," Kristen said. "The neonatologist knew immediately. He whisked her away and said, 'I think she has CMV and let's do a urine test.' "

The Spyteks were devastated.

"I remember one of the doctors telling Kristen, 'You didn't do anything wrong. Don't beat yourself up over this. You could've been in Starbucks getting coffee and the person could've sneezed on it and you take a sip of your drink and get it,' " John said. "Our question to them was well if you can't prevent the spread of colds in this country, why is there this massive movement run by the government every year to cough into your arm? You can't prevent colds, but they warn people to do that. And this one has disastrous effects. And the stats are there that this is affecting so many people But (CMV) is never talked about and no one is doing anything about it.

"So we decided from the start, we can't sit around and do nothing."

Kristen, 34, eventually left her job in marketing to begin the National CMV Foundation. The primary goal is to inform people about CMV and to get obstetricians, gynecologists and pediatricians to talk about the virus and develop routine screenings for it.

Women with young children, or who work with young children, may be at greater risk for contracting CMV, during pregnancy. Studies in child-care settings suggest that as many as 75 percent of toddler-aged children have CMV in their urine or saliva.

From the start, Evelyn proved to be tougher than any NFL defensive lineman. "She was a fighter from day one," Kristen said. "She didn't need oxygen. After two weeks, we took her home and she was not even 5 pounds. She was our first child and you have such amazing hopes and we treated her no differently. We had to see all these specialists and people would comment how we just took her where ever we needed to go like there were no obstacles. She just rolled with it with a smile on her face."

Evelyn endured all kinds of odd, adaptive equipment. She had occupational therapy, speech therapy and was in and out of hospitals with epilepsy. But her immune system, and spirit, were strong. Some children with congenital CMV live well into their 30s.

At 14 months, Evelyn received a Cochlear implant in her left ear. The surgery enabled the Spyteks' daughter to hear her parent's voices for the first time.

"When she first could hear us, she was like, 'Oh my gosh, that's what I thought you sounded like!' " Kristen said.

But Evelyn was having trouble gaining weight, and like any parents, the Spyteks wanted to improve the quality of their child's life. So they elected for surgery to provide her with a gastrostomy tube for stomach feeding. Complications arose from that surgery, then another was required and her tiny body was unable to fight off an infection.

One day after Christmas in 2014, Evelyn Grace Spytek died. She was 21 months old.

Amid the grief came more grace. Three weeks after their daughter's death, Kristen gave birth to a healthy baby boy named Jack. "We thought, 'Oh my God, how can this be happening?' " Kristen said. "Jack sort of saved us. We had to take all our energy and invest it positively between the foundation and Jack and that helped us put all the emotion someplace."

The National CMV Foundation is funding research that the Spyteks hope can eradicate the defects from this virus in 30 years. In the meantime, they hope to persuade doctors to do universal screening of babies for CMV. Sometimes, symptoms such as hearing loss may not occur for several years.

"The biggest thing is awareness to start," John said. "People need to start learning about it. People need to start asking their doctors about it."

John says he begins each day thinking about Evelyn. He wants to walk into her room. He wants to hold his baby girl.

"When she was here, I remember being with some friends at Thanksgiving and they asked, 'What are you thankful for?' " John said. "And I said for my daughter, Evelyn, who taught me more about perspective and patience at that time in 20 months than I had learned in 33 years. Kids do that always. Her gifts to us are very personal and very unique. For me, she was life altering from a perspective standpoint, and I think she's made me a better father and a better person, and she's made my wife a better person and a better mother. And she continues to do so.

"The first thing I do every morning is I think about her. And I wish on everything that I could go get her. I feel like if I live my life a certain way, it's honoring her, and I hope people recognize she's the inspiration."

For information or to contribute to the foundation, visit www.nationalcmv.org.

What is CMV?

Cytomegalovirus (sy·toe·MEG·a·low·vy·rus) is a common virus that is generally harmless to people with healthy immune systems. In fact, most people have been exposed to CMV at some point in their lives without realizing it.

CMV and pregnancy

CMV can present a critical problem for babies who are infected with CMV before birth. This is referred to as congenital CMV and it occurs when a pregnant woman passes the virus to her unborn child, causing birth defects and developmental disabilities. In the United States, about one to four percent of uninfected women have a first CMV infection during a pregnancy, and about 40 percent of women who become infected with CMV for the first time during pregnancy pass the virus to their fetuses.

How common is congenital CMV?

Congenital CMV affects one in every 150 babies born each year (about 30,000 children annually), making it the most common congenital viral infection in the United States. One in every five children born with congenital CMV will develop permanent health problems (roughly 5,000-plus children) with as many as 400 infant deaths annually.

Nearly 90 percent of infants born with congenital CMV appear healthy at birth, and the vast majority will not have any visible symptoms or long-term issues. Health problems or disabilities caused by congenital CMV infection can sometimes appear roughly two or more years after birth.

Prevention

Do not share food, utensils, drinks or straws.

Do not put a pacifier in your mouth.

Avoid contact with saliva when kissing a child.

Do not share a toothbrush.

Wash your hands.

What to do

If you find out that you became infected with CMV during your pregnancy, talk to your pediatrician about having your baby tested for congenital CMV. The testing is relatively quick, simple and painless, and is covered under most insurance policies.

For information, go to www.nationalcmv.org.

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Family of Bucs executive raises awareness of CMV birth defect 04/20/16 [Last modified: Wednesday, April 20, 2016 7:36pm]
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