When Kathleen Muldoon had her second child everything was going smoothly. The delivery was short, the baby's APGAR score was good and he was a healthy weight.
"Everyone said he was amazing," says Muldoon.
But when a doctor noticed that Gideon was jaundiced, everything changed. Nurses put him under a fluorescent light to treat the problem. But it didn't work. Instead, he developed a red rash all over his body. Blood work indicated newborn Gideon was infected with a virus Muldoon had never heard of: Cytomegalovirus or CMV – a virus that can cause severe birth defects.
Muldoon, 40 of Peoria, Ariz., remembers the pediatrician coming in to deliver the bad news.
"He couldn't even make eye contact," she says.
Gideon was diagnosed with extensive brain damage, spastic quadriplegic cerebral palsy, visual impairment, epilepsy and microcephaly – that's the neurological condition also caused by the Zika virus, where the baby's head is abnormally small. Gideon spent the first four weeks of his life in the neonatal intensive care unit.
Gideon's case is unusually severe. Every year about 40,000 babies are born in the U.S. infected with CMV. Most won't have any symptoms. But 1 in 5 will have CMV-related problems, like hearing loss, cognitive delay or neurological problems like Gideon.
Cytomegalovirus Is Everywhere
Like cold and flu viruses, CMV is transmitted from person to person. It travels in bodily fluids like blood, urine and saliva. It is extremely common, according to Dr. Joseph Bocchini, a pediatric infectious disease specialist with Louisiana State University.
"Cytomegalovirus is everywhere," he says. It is hard to avoid.
By middle age, more than half of adults are infected. By age 5, nearly 1 in 3 children have it. They pick it up from kissing or touching someone or something, like a door handle, table or toy that's been contaminated. The virus can live on these objects for hours. Once you've been infected with CMV, the virus stays with you for life.
For most people, CMV isn't a problem. It rarely causes symptoms and if it does they're pretty mild, similar to a cold, says Dr.Brenna Hughes, an associate professor of obstetrics and gynecology at Duke University School of Medicine. CMV usually just causes sniffles and possibly a low grade fever, she says.
However, CMV infection can cause serious health problems for people with weakened immune systems, such as individuals with HIV or those who have an organ transplant. And it can be a big problem for pregnant women.
Timing Can Make All The Difference
CMV can pass through the placenta to the fetus, but that doesn't happen very often. If a woman was infected with CMV before getting pregnant, there's a less than 1 percent chance she'll pass the infection on to her fetus. And even if the baby is infected with CMV, the majority don't have any symptoms. But timing can make all the difference, says Hughes.
If a woman gets infected for the very first time when she's pregnant, the virus is more dangerous "probably because there's more virus and less of an immune response already present in the mother," says infectious disease specialist Bocchini. About 10 percent of these babies will likely have CMV-related problems and about 3 percent of them will be severely affected like Gideon.
The stage of pregnancy when first infected also makes a difference. If the mother's in her first trimester, when organs like the brain are developing, the consequences can be devastating. Doctors told Muldoon she was likely infected during her first trimester.
Today, Gideon is 3 years old. He uses a wheelchair, can't see well or speak, but he loves sounds and music. He giggles loudly when he hears his mother sing. But Muldoon is worried that even his precious hearing may be in jeopardy. CMV can cause hearing loss three to five years after the initial infection, and Gideon is starting to show some hearing loss in his left ear.
'I Had Never Heard Of This Virus'
When Muldoon reflects on her pregnancy, she is astonished that she didn't know anything about CMV before she had Gideon, especially since she's an anthropologist who teaches anatomy to medical students at Arizona's Midwestern University.
"And yet I had never heard of this virus," she says.
Muldoon's not alone. A survey from the National CMV Foundation found only 9 percent of women knew about the virus and a study by the Centers for Disease Control and Prevention found fewer than half of OB-GYNs discuss CMV with their patients.
Hughes, who is also a spokesperson for the American College of Obstetricians and Gynecologists (ACOG,) says pregnant women are generally told the best way to avoid infection is "careful hand washing," and to avoid interacting with sick people.
Until 2015 ACOG recommended more aggressive prevention efforts, especially for women who are around toddlers, who can be hot zones for viral transmission with all their dribbling and drooling. They recommended pregnant women wash their hands every single time after they handle a child's toy or laundry and not to kiss a child on the face where contaminated saliva might be present. These suggestions were scrapped when no conclusive evidence was found that they actually prevent infection, says Hughes.
There's currently a debate in the medical community about whether to screen all newborns for CMV. Many doctors are skeptical, since there is no proven treatment. One study suggests antiviral medication in the first six months of life might decrease the risk of later hearing loss and cognitive decline.
"This is a challenging virus," says Dr. Mobeen Rathore, an infectious disease specialist with the University of Florida. "We need better diagnostic tools, better treatments and better ways to manage infection," he says.
Obstetrician Hughes agrees, and says further research and larger studies are needed. She notes that Congress approved $1 billion to support Zika virus research and prevention, but CMV does not have a line item for funding in the annual budget — this, despite the fact that CMV is far more common in the U.S. than Zika.
RACHEL MARTIN, HOST:
Today in Your Health, we're going to take a look at a virus that can cause severe birth defects. Yes, as if Zika weren't scary enough, right? But this is something else. It's a virus called CMV, which causes disability for as many as 8,000 newborns in this country every year. NPR's Patti Neighmond reports.
PATTI NEIGHMOND, BYLINE: It was the best birthday ever. November 12, 2013 - 11/12/13. And Kathleen Muldoon's delivery of her second child went smoothly.
KATHLEEN MULDOON: When he was born, everyone said he was amazing. He had great APGAR scores. His weight was perfect.
NEIGHMOND: But as the family was leaving the hospital, a doctor noticed newborn Gideon looked a bit jaundiced. Nurses put him under a fluorescent light to treat the problem. It didn't work.
MULDOON: While he was under the lights, he presented pretty quickly with a red, blueberry muffin-type rash all over his body.
NEIGHMOND: Bloodwork was quickly done. And soon after, the pediatrician came to talk with Muldoon and her husband Seth.
MULDOON: And I remember him walking into the room. He wouldn't even make eye contact with Seth and I at first. He just washed his hands. And he wasn't looking directly at us when he said, I don't know what to tell you guys, but I think it's CMV.
NEIGHMOND: CMV, cytomegalovirus - like cold and flu viruses, it's transmitted directly from person to person. It travels in bodily fluids like blood, urine and saliva. Dr. Joseph Bocchini, a pediatric infectious disease specialist, says CMV is extremely common.
JOSEPH BOCCHINI: Cytomegalovirus is everywhere.
NEIGHMOND: By middle age, more than half of all adults are infected. By age 5, nearly 1 in 3 children have it. They pick it up from kissing or touching someone or something, like a door handle or a toy, that's been contaminated. And once you get the virus, it stays with you for life. For most people, CMV is not a problem. Obstetrician Brenna Hughes says it rarely causes symptoms. And if it does, they're pretty mild.
BRENNA HUGHES: Most of the time, people think they just had the common cold, some sniffles. Occasionally we'll see people have a low-grade fever.
NEIGHMOND: But CMV can be a big problem if you're pregnant, especially if you get infected for the first time in the first trimester, when organs like the brain are developing. In that case, the consequences can be devastating, as they were for Gideon.
MULDOON: He's been diagnosed with spastic quadriplegic cerebral palsy. He also has visual impairment because of damage to the vision centers of his brain. He has epilepsy.
NEIGHMOND: And microcephaly, the neurological condition also caused by Zika where an infant's head and brain are abnormally small. Today, Gideon's 3. He's in a wheelchair. He doesn't see well, and he can't speak.
COMPUTERIZED VOICE: I all done.
NEIGHMOND: This is a fancy new device everyone is thrilled with.
COMPUTERIZED VOICE: Sit.
NEIGHMOND: Gideon fixes his gaze on a computer screen and chooses a symbol he wants to communicate, like a picture of a cup or some juice.
COMPUTERIZED VOICE: I like juice.
MULDOON: He just chose that sentence.
NEIGHMOND: The computer then gives it a voice.
COMPUTERIZED VOICE: Juice.
NEIGHMOND: Muldoon calls it Gideon's talker.
MULDOON: Gidi (ph), do you like juice? Do you like juice, Gideon?
NEIGHMOND: Now, not every child who's infected with CMV has disabilities as severe as Gideon. The majority of babies born with the virus don't have any symptoms. For those who do, the most common problems are hearing loss and developmental delay. The difference has a lot to do with timing. If a woman is already infected with CMV before getting pregnant, there's only a very small chance her baby will have any problems. But it's a whole different story if she gets infected for the first time when she is pregnant. In that case, about 10 percent of babies will be born with CMV-related problems. Pediatrician Joseph Bocchini.
BOCCHINI: Probably because there's more virus and less of an immune response already present when the infection occurs. That may lead to more infections of the fetus.
NEIGHMOND: And doctors told Muldoon she was likely infected at the worst time, during her first trimester.
MULDOON: (Singing) The wheels on the bus go round and round, round and round...
NEIGHMOND: Music is precious for Gideon. His hearing is mostly intact, and he loves listening to his mom sing.
MULDOON: (Singing) ...All day long.
NEIGHMOND: But Muldoon's worried. CMV can cause hearing loss three to five years after the initial infection, and Gideon's starting to show some hearing loss in his left ear. Muldoon says she can't believe she never heard of CMV, especially since she teaches anatomy to medical students.
MULDOON: Even before Gideon was born, for close to a decade, I had been teaching about embryology and all the different factors that can go into creating a congenital birth defect. And yet, I'd never heard of this virus.
NEIGHMOND: She's not alone. Dr. Brenna Hughes, who's also a spokesperson for ACOG, the American College of Obstetricians and Gynecologists (ph), says fewer than half of OBs discuss CMV with their patients.
HUGHES: What we generally tell pregnant women is the best way to avoid CMV infection, like any infection when you're pregnant, is careful hand-washing and then just common sense to avoid things that could make you sick like interacting with people who are sick.
NEIGHMOND: Until 2015, ACOG recommended more aggressive efforts, especially for women who were around toddlers, who can be hot zones for viral transmission with all their dribbling and drooling. They suggested pregnant women wash their hands every single time they handle a child's toy or laundry and stop kissing a child on the face where contaminated saliva might be present. Those suggestions were scrapped when they found no conclusive evidence they actually prevent infection. But when Kathleen Muldoon got pregnant again, she eagerly embraced aggressive precaution. She didn't want to get infected by another strain of CMV.
MULDOON: It wasn't that hard to do that for nine months, you know. I explained to my daughter that we didn't kiss on the face while Mommy had a baby growing inside her, and it was no big deal.
NEIGHMOND: Her third child, Cormac, was born healthy. There's currently a debate in the medical community about whether to screen all newborns for CMV. But many doctors don't want to do that until there's proven treatment. The big push now is to develop a vaccine and get more funding for research.
Patti Neighmond, NPR News.
(SOUNDBITE OF RAS G SONG, "JUJU") Transcript provided by NPR, Copyright NPR.