When Richelle Lanphear was pregnant with her fifth child she says she had recurring dreams that her baby would be born sick.
Richelle felt her fears had materialized when the family pediatrician diagnosed her six-day-old baby girl Sammy with an abnormally small head, a condition known as microcephaly.
“He was very gentle with telling us there’s going to be difficulty with her later on,” said Luke Lanphear, Sammy’s father. “She was not going to be a typical child.”
The Lanphears were told that Sammy had a severely underdeveloped brain. Most likely, she would never be able to walk or talk.
“I wanted to hold on to the hope that everything was going to be fine,” Luke said. “I could see my wife melting at the time and it hit me that this isn't going to be typical. This is going to be more of a journey.”
Sammy had been infected with a little-known virus: cytomegalovirus, or CMV. It is a leading cause of congenital birth disabilities and the primary source of non-genetic hearing loss in the United States. Yet few people outside of the medical world are aware of it.
Not even Richelle, who was a childbirth educator, had heard of CMV.
“There’s a real feeling of unreality,” Richelle said. “How is this even possible? Why haven’t people heard of it?”
Each year in the U.S., about 1 in 200 babies is born with congenital CMV, according to the Centers for Disease Control. Most children will not have significant long-term health problems. But about 1 in 5 will develop severe neurodevelopmental conditions such as epilepsy, cerebral palsy and learning disabilities.
In Colorado, since 2014, 19 cases of babies born with congenital CMV have been reported to the Colorado Department of Public Health and Environment. This figure doesn't include babies who are diagnosed with CMV after birth.
Most adults over the age of 40 have contracted CMV at one point in their life. It’s a common virus that is part of the herpes family and is usually not dangerous. However, when a woman who’s never been infected with CMV contracts the virus for the first time while pregnant, like Richelle did, it can pose serious risks to unborn babies, especially if the mother is infected during the first trimester.
“Awareness would probably be beneficial”
A 2010 HealthStyles Survey, licensed by the CDC, found that of nearly 4,200 participants, only 13 percent of women and 7 percent of men said they had heard of CMV.
“Of the moms who have come into our clinic for congenital CMV, I’ve never met a mom who knew what it was,” said Shannon Hughes, physician’s assistant at Colorado Children’s Hospital Colorado, who founded the hospital’s CMV clinic.
Hughes says that most of the patients she encounters learn about CMV once their baby is born infected with the virus.
“I have had moms tell me that this diagnosis can be very isolating for them because they don't know a lot of other people who have children who have the same disease symptoms,” she said.
At the CMV clinic, symptomatic babies diagnosed with CMV can be treated with antiviral drugs within three weeks of birth. These medications can mitigate the symptoms caused by the virus and improve the outcomes of the babies in the long term.
Outside of that time frame, the medication is not a viable option.
In some cases, CMV symptoms can be mistaken for more benign conditions. And some infected babies don’t immediately exhibit any symptoms at all.
This uncertainty has some researchers calling for universal screening of newborns to accurately diagnose CMV-infected babies and treat them in a timely manner. In Utah and Connecticut, screening for CMV is mandatory for newborns who fail hearing tests. Other states, including Hawaii, Illinois, Texas and Tennessee, have passed legislation for CMV awareness campaigns. Currently, there is no CMV-focused legislation in Colorado.
Some in the medical community are hesitant to recommend newborn screening for fear of unnecessarily worrying patients. But studies show that parents, overall, favor the procedure.
“Get these babies diagnosed and treated, so that nobody falls through the cracks,” she said.
Prevention is Not So Simple
“We recognize that CMV is a significant health concern,” said Dr. Kent Heyborne, ob-gyn and chief of obstetrics at Denver Health, who sees the most severe in utero cases of CMV infection. “But since we don't really have a good strategy to deal with it, prevention has not thus far been part of routine care.”
There are no national guidelines that recommend medical professionals warn expectant mothers about CMV as part of routine prenatal care. And currently, there is no vaccine available to prevent CMV infection among pregnant women.
CMV is most commonly spread through urine and saliva. Young children are often exposed to the virus in daycare and school. If the virus is active, CMV is contagious. And if an expecting mother or caregiver does not have antibodies to CMV, simple interactions with kids can be risky.
“It's hard to tell a woman she can’t change diapers,” Heyborne said. “It’s hard to tell a woman she can't kiss her child or share food with her child.”
Before doctors alarm their patients, Heyborne says there needs to be more research done.
“Typically, before we would implement something like that we would want to have some evidence that was that was actually going to be effective,” he said.
But for mothers like Richelle, who believes she contracted CMV when she was babysitting a toddler, medical professionals are disserving their patients by not warning them about CMV.
“There's a lot of easy prevention measures if somebody tells the mom about them,” Richelle said. “Nobody ever tells them, ‘Kiss on the forehead instead of on the lips when you pregnant.’ I think they should have a choice and they should be told how they can prevent it.”
Heyborne has a simple recommendation to mothers, although he says it may not be a complete shield against contracting CMV.
“Good hand-washing is to be encouraged,” he said. “Beyond that, we don't have any really good evidence based strategies address transmission prevention.”
Sammy’s Life-Long Struggle
Sammy has cerebral palsy, caused by CMV. She is deaf and non-verbal, and she hasn’t eaten solid food since she was seven months old.
Her survival depends on a strict medical routine — one that her parents have perfected over the course of Sammy’s seven years of life.
Twice a day, Sammy must wear a vest that shakes her rapidly. It helps clear her lungs of fluid that could choke her. She takes almost a dozen medicines, laid out neatly on a nearby table.
“The full weight of that I think only hits every once in a while,” Richelle said. “Most of the time you're just trying to get by every day.”