The Centers For Disease Control, defines cytomegalovirus, known as CMV, as a common virus that infects people of all ages. By age 40 more than half of adults have been infected with CMV. Once CMV is in a person’s body, it stays there for life and can reactivate.
For most people, CMV isn’t even a blip on their health radar. Many have no signs or symptoms. Others might experience symptoms that are also linked to a variety of common maladies like a sore throat, fever, swollen glands or fatigue. Symptoms are so mild that nine years ago, when Heather Johnson was pregnant with her twin sons, she thought she only had a cold.
“CMV was never mentioned, even though they were signs of problems on an ultra sound before they were born,” explained Johnson, who was living in Tulsa at the time she gave birth. “After the twins were born they ran a test. It took three days to get the results back.”
The test results confirmed both babies were CMV infected. That cold Johnson thought she had, was really the CMV virus which she, in turn, had unknowingly passed to her twins. Johnson says today both boys have cerebral palsy and are in wheelchairs. Both are also developmentally delayed.
“They have physical therapy, occupational therapy and speech therapy everyday,” said the mom of six as she described the daily life of her two youngest children.
Johnson said she is part of a group of mothers with children effected by CMV from across the state who have been working for the last several years to get the virus recognized in Oklahoma.
“We’ve been trying to get legislation passed requiring CMV testing for expectant mothers but we haven’t made much headway,” she says.
Part of the issue, Johnson said, is the lack of public awareness and an increase in the demand for testing.
“People just don’t know how it effects the lives of these children. It changes the life you thought your child was going to have and it changes it forever,” she said.
Those life-altering changes for Johnson’s sons aren’t just the day-to-day struggles associated with cerebral palsy or development delays, it has included spending their first 76 days in intensive care and since then nine surgeries between the two, as well as chemo therapy.
While Johnson’s sons were diagnosed as newborns, Mendy Spohn, administrator of the Carter, Jefferson, Johnston, Love, Marshall and Stephens County Health Departments, said 90 percent of children born with CMV have no immediate symptoms and that’s part of the reason raising the level of awareness is so important.
“Children born with congenital CMV who go undiagnosed may go on to have developmental or medical problems later in life with no diagnosis of origin. This is why newborn testing or screening could possibly help parents and medical professionals provide early intervention to the severity of disability,” she explained.
Melissa Woolly, area March of Dimes development manager, said bringing CMV to the forefront of the organization’s efforts to give every baby a “fighting chance” is on tap locally and nationally for 2017.
“CMV is a massive threat to unborn babies, much larger than Zika. We also know that more children will have disabilities due to congenital CMV than other, well-known infections and syndromes including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and Pediatric HIV/AIDS. We know CMV infections are more common than the combined metabolic or endocrine disorders currently in the U.S. core newborn screening panel. We know each year 30,000 children or one in 150 are born with congenital CMV, causing 400 deaths and leaving 8,000 with permanent disabilities. And, we know congenial CMV can only be diagnosed if the virus is found in an infant’s urine, saliva, blood or other body tissues during the first three weeks of life,” Woolly said.
“We know it’s vital to get the word out in order to combat the effects of CMV. That’s what we’re going to do with a joint summit and an awareness campaign with area health departments in the coming year,” Woolly said.
Johnson called the summit and awareness campaign an “amazing” opportunity to put CMV and its consequences into the spotlight.
Woolly emphasized that while the lack of knowledge about CMV is having heartbreaking and traumatic effects, the awareness effort will give area residents good news.
“There are precautions that can be taken and the best part is these safeguards are simple and easy,” she said.
“The precautions may seem silly to some, like don’t give your little kids a bite off the spoon you’re eating from. But, I would point out these precautions are being given by medical people who know what they’re doing. They are all things that are easy to do. If you know what to do it can mean the difference in the life your child will have,” Johnson said.