In August 2019, when Corey Clem was pregnant with her daughter, she caught a cold with a "pretty bad cough," she told TODAY. She visited her doctor to make sure everything was OK and received a prescription for cough medicine. The next month, she gave birth to her daughter, Ellie, and noticed some unexpected things about the newborn.
"She was a lot smaller than we thought she was going to be, and she had this petechiae, these little red spots all over her," Clem, 32, from New Home, Texas, said. "She was otherwise healthy."Doctors did some bloodwork to try to understand why she had petechiae, and they found that Ellie's platelet count was low. She also failed her newborn hearing test twice, but they reassured Clem that happens sometimes, especially when babies have fluid on her ears. Four days after the family returned home, they learned what was wrong.
"Our doctor called to give us the news that she had CMV. The first thing our pediatrician said was, 'Do not Google it,'" Clem said. "That was the first time I had ever heard of it."
What is CMV?
CMV stands for cytomegalovirus. It's such common virus that half of all adults have had it by the time they turn 40, according to the U.S. Centers for Disease Control and Prevention. Most people never know they have it because it's often asymptomatic. In others, it feels like the "common cold."
"Usually, it's not a problem in the sense that you don't get long-term health consequences," Dr. Allison August, vice president of clinical development for infectious diseases at Moderna, told TODAY. "If you are immune compromised, then you are more at risk for having a severe case. And it's particularly concerning for pregnant women, specifically if they get CMV for the first time."
Pregnant people's babies are at risk for congenital CMV, which can lead to life-long health problems. CMV is the No. 1 cause of birth defects due to an infection, according to the CDC.
"Every 30 minutes in the United States, there is a baby born affected with CMV, and one in five of those babies have long-term health consequences," August said. "Despite these statistics, 91% of women have never heard of CMV."
Andy Jones and his wife were part of that majority. The couple had two daughters and decided to have a third child, secretly hoping for a boy. During her third pregnancy, Jones' wife visited the doctor at 35 weeks pregnant for a routine screening. Then Jones received a frantic call.
"My wife said they were taking her down for an emergency C-section. Ross's heart tones were low," Jones, 35, of Birmingham, Alabama, told TODAY. "Honestly, I didn't even know what that meant at the time."
He rushed to the hospital and waited without answers for a while.
"A doctor came out and said that my son, Ross, had been born alive but was not breathing," Jones said. "They were able to resuscitate him, but it took, they estimated, about two to three minutes. So there was always the specter of, 'Was there brain damage? Or how damaged were any of his organs?'"
Doctors were unsure why Ross was so ill.
"He was really critical and down in the (neonatal intensive care unit)," Jones said. "I went to see him. (It was) just unbelievable how small and frail and sick he looked. He opened his eyes super briefly, and that actually turned out to be the only time I saw his eyes."
For the next three and a half days, Ross clung to life. It seemed like his organs were recovering, but then doctors rushed in with a crash cart to revive him. By the fourth day, medical staff exhausted all the interventions they had.
"His heart just stopped, and we let him go," Jones said. "I still never heard the word CMV."
Six weeks later following an autopsy, they learned why Ross died.
"They said my wife must have gotten a CMV infection in her first trimester that passed onto Ross, and it had six or seven months to grown and spread because what they found was that virtually every one of his organs was fully infected with CMV," Jones said. "They think he was probably just dying (at the 35-week scan)."
Like the others, Kristen Spytek had never encountered CMV until doctors detected some "abnormal ultrasound findings" when she was pregnant with her daughter," she told TODAY.
"When my child was born, it was the neonatologist who whisked her away and said, 'I think that this is congenital CMV,'" Spytek, the CEO of the CMV Foundation, said. "She was 3 pounds 14 ounces. She had microcephaly."
The doctors gave Spytek's daughter antivirals to treat her.
"(These treatments) do not retroactively restore what has been lost or different, but it will help improve outcomes," Spytek explained. "We find testing to be very, very important either during pregnancy or after so these babies have a chance for early intervention and other treatments."
Spytek's daughter had hearing loss, cortical visual impairment, epilepsy and hypotonia, meaning she couldn't sit on her own. She struggled to eat and underwent surgery for a feeding tube. She died after that procedure at 21 months old.
"Given the chance again, I would absolutely do the treatment each and every time," Spytek said.
Spytek hopes that a vaccine could prevent what happened to her daughter from happening to other families.
"We're really pushing for a CMV vaccine," she said.
There's currently no vaccine for CMV, and that's why raising awareness of it remains so essential, August and Spytek said.
"The best that we have in terms of counseling is prevention," August said. "The more education everyone has about how to prevent CMV, then that is one very important way that we can really conquer and certainly, at a minimum, decrease the spread."
To prevent the spread, August recommends that parents who are pregnant or have contact with a pregnant person do the following:
Don't share food, utensil or drinks with children
Don't put a child's pacifier in your mouth
Don't share toothbrushes
Avoid contact with saliva such as kissing a child
Moderna has a vaccine in phase 3 clinical trials and researchers are still recruiting people for it, August said. Until then, Spytek emphasizes what she calls a "knowledge vaccine."
"We try and educate on the risks while pregnant," she said. "(People are) not talking about CMV, and that's concerning to us because it is so very common."