Kimberly LaPlante’s second pregnancy was as uneventful as her first. She suffered numerous colds, probably caught from her older daughter, Georgia, who was in day care. But LaPlante wasn’t concerned. “I didn’t think much of it,” she says. “She was bringing home all sorts of germs, as all kids do.”
LaPlante, 36, a statistician who lives in Springport, Mich., had a full-term and normal delivery with daughter Audre, now 2. Although Audre failed her initial newborn hearing screen, the doctors told her parents not to worry, given the high rate of false positives. They suggested a repeat test later, which the baby passed. Her parents assumed she was fine.
But a year later, Audre still wasn’t talking. “She didn’t have any hard consonant sounds in her babbling,” LaPlante says. By age 15 months, she was unresponsive to conversation. “In day care, she was only engaging in something she could see, such as clapping,” LaPlante says.
Eventually, she was diagnosed with a severe hearing loss, which probably had been progressive since birth, the doctors said. Further tests performed on stored dried blood samples taken right after delivery revealed she had been infected with cytomegalovirus (CMV) during pregnancy.
CMV, a common virus in the herpes family, is harmless most of the time, except for those with impaired immune systems — and to a developing fetus.
Like all herpes viruses, including those responsible for genital herpes and chickenpox (and later shingles), infection with CMV is chronic. The virus remains in the body, although it can become dormant, and then less likely to be passed along during pregnancy. During an active primary infection, however, if transmitted in utero to a developing fetus, it can cause premature birth, hearing loss, vision problems, low birth weight, developmental delays and brain abnormalities, among other things.
Women can catch it from their toddlers.
In women with a primary CMV infection, the virus is transmitted to the fetus up to about 40% of the time, says Suresh Boppana, a CMV expert and professor of pediatrics and microbiology at the University of Alabama at Birmingham.
“Those who’ve had a past infection can still pass it on to babies, but the frequency is much less, about 1%, likely because the mother already has a certain level of immunity which also protects the fetus,” he says.
CMV infects about 1 in every 200 babies during pregnancy, although most infants are asymptomatic, Boppana says. Still, “about 10% to 15% will have a bad outcome, the most common being hearing loss,” he says. “Hearing loss can be present at birth, or start developing later on, usually in the first few years of life, and then continue to deteriorate over time.”
CMV is spread through direct contact with bodily fluids, such as saliva, blood or urine, and women can catch it from their toddlers when then they share food, cups and utensils, change diapers, and even kiss, especially on the lips.
The American College of Obstetricians and Gynecologists lists CMV as one of the pathogens pregnant women should try to avoid, advising those with young children in the home to wear gloves and wash their hands frequently. Even so, “awareness is a huge problem,” Boppana says.
Many mothers of afflicted children criticize their obstetricians for failing to warn them about CMV, and not advising them of steps they should take to reduce the chances of infection.
“I never knew I was vulnerable and my obstetrician never told me to be careful around Georgia,” LaPlante says. “No one said: ‘Don’t share utensils, or put her pacifier in your mouth. Don’t give each other sloppy kisses.’ But all of that is normal mother behavior. I wasn’t ever told the things not to do. I went back to my obstetrician and told her I was upset, and she told me that [discussing CMV] wasn’t a part of standard prenatal care. Had I known earlier, I would have tested Audre’s hearing more regularly and caught the decline in her hearing more quickly.”
Megan Pesch, a pediatrician at the University of Michigan’s C.S. Mott Children’s Hospital whose third daughter became infected during pregnancy, says that many health-care providers tend to minimize or ignore the risks. She says her own medical training downplayed the dangers.
“We were taught that CMV babies looked like ‘blueberry muffins,’ with these spots all over them, and that they were extremely small, with small heads and jaundice, with enlarged spleens and livers, and were very sick,” she says. “In truth, this is the exception and not the rule. I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic.”
Pesch’s daughter, now 2 1/2, is deaf. Pesch probably contracted the virus from one or both of her two older daughters, then 3 and 2, she says.
“Toddlers and preschoolers have an extremely high viral load in their bodily fluids, and most women tend to get it from their children,” she says. “Kissing on the lips, sharing food — you bet I ate that waffle with only one bite in it — not washing hands after changing a diaper. But when you are a mom on the go, it’s easy to miss. I was not looking out for that. It makes me sick to think about it.”
Her newborn daughter failed her hearing screen, but Pesch wasn’t alarmed at first. “I knew that 90% of babies who fail end up passing eventually,” she says. “As a pediatrician, I had reassured dozens of parents in the same situation in the past. I was resolute not to be anxious mom.”
During a shopping trip, however, a store alarm went off, frightening Pesch, but it had no apparent effect on the baby.
“I leapt out of my skin, and she slept right through it,” Pesch recalls. “We decided to check her hearing again. They couldn’t get any reaction from her, and told us she was profoundly deaf. We were not prepared for that.”
The doctors told Pesch the cause probably was genetic.
“I asked about CMV, not because I had an inkling, but I was just going down my list as a pediatrician, and we were told it was very unlikely because she looked so normal,” she says. “We had her dried blood spots tested, and they came back positive,” meaning she was infected during pregnancy.
Her daughter received cochlear implants when she was a year old, one in each ear, which enable her to hear sounds, but they won’t restore normal hearing.
“It’s been a wild experience watching her learn to hear,” Pesch says. Still, “she’s not picking up on things as quickly as we would like. She responds. She bops along to songs. She’s picking up sign language. She’s a happy kid. Her life is very full and joyful.
“The suffering and struggling is more on my part, having to adjust my expectations,” she says. “I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”
Pesch and other mothers are trying to educate more women about fetal CMV. Kristen Hutchinson Spytek, a marketing consultant in Tampa, was one of six women who established the National CMV Foundation, which seeks to make CMV information more available, and is pushing for universal CMV newborn screening.
Several states and medical systems already test newborns for CMV, but usually only after they fail a hearing screen, according to the foundation.
Spytek’s daughter, Evelyn Grace, was born in 2013 with multiple medical issues resulting from congenital CMV — impaired vision, poor muscle tone and brain abnormalities — and died at age 21 months from an infection she acquired during surgery to insert a feeding tube. Spytek, who later gave birth to two uninfected sons, is frustrated by the lack of CMV awareness, especially from doctors.
“They tell you about wine and sushi and kitty litter, but not CMV,” she says, referring to the risks posed by alcohol and organisms in raw fish and cat waste.
Meanwhile, researchers are trying to develop treatments, as well as a vaccine to prevent infection in women of reproductive age.
Moderna, a pharmaceutical and biotechnology company, has developed an experimental vaccine based on the same mRNA approach used in its recently approved coronavirus vaccine, with clinical trials underway.
Scientists also are studying whether the antiviral drug valganciclovir can halt or slow the progression of hearing loss in affected children, although not reverse it. The drug, which interferes with viral replication, already is in use among transplant recipients and patients with HIV.
“The goal is to determine if this drug actually works in this group of children, and whether it is safe,” says Albert Park, the study’s principal investigator and chief of pediatric otolaryngology at the University of Utah. “We don’t expect to see a lot of improvement, but we are trying to avoid further worsening. It has real implications for these children, as hearing loss often gets worse over time and can have a huge impact on families.”
LaPlante says she agrees that the consequences for unprepared families can be devastating. “I was blindsided,” she says. “More moms need to know about this.”
Daughter Audre underwent cochlear implant surgery in February. The devices were activated in March, and LaPlante says she hopes they will help.
Nevertheless, even with the implants, “Audre will always be dealing with hearing loss” she says. “It will be part of her life forever.”