Sydney Hoffman, riding her pony. Sydney was born with CMV.
Melissa and Clint Hoffman with their children, Hunter, and Sydney, seated.
By Jill Daly / Pittsburgh Post-Gazette
“I had never heard of CMV,” said Melissa Hoffman, a Utica, Venango County, mom who 10 years ago was told she had given cytomegalovirus to her newborn daughter, born early and facing the possibility of severe disabilities.
What she didn’t know — along with perhaps most women of child-bearing age — was that CMV is a widespread virus that can have serious consequences for unborn children and people with weak immune systems.
Little Sydney Hoffman, born small at 5 pounds with a tiny head and other signs of a CMV infection, including a large liver, has since grown into an active youngster, her mom reported.
Effects of CMV on an unborn child can be similar to those of the Zika virus, which in contrast has stirred up intense concerns about its link to death and disability in infants. Much lesser known, CMV is part of the herpes family and can infect people of all ages, although most will have no symptoms.
It’s estimated that about half of all adults have CMV, which stays in the body for life. People with weakened immune systems can be hit with brain, liver, spleen, lung and growth problems.
The U.S. Centers for Disease Control and Prevention says in the United States about 1 out of every 150 babies are born with CMV, and nearly 1 in 3 children already have the virus by the age of 5.
About 20 percent of babies with congenital CMV will be sick or develop some disability in the first few years of life, most often hearing loss, according to the CDC. Other disabilities can include problems with learning or communicating and vision loss.
In the most severe cases, babies can be born with small heads and brains, called microcephaly, just as can happen with Zika.
Paul Weinbaum, maternal-fetal medicine specialist for Allegheny Health Network, said people may have an exaggerated view of the threat from Zika and have little to no understanding of CMV.
“Zika is a new phenomenon. Its potential impact in the United States is far less than in the Caribbean islands. We don’t have the mosquito problem; we have air conditioning. People in Brazil don’t have [the advantages] we have.”
In contrast, CMV has already arrived, Dr. Weinbaum said, adding that studies show it’s probable that 75 percent to 80 percent of people in urban areas have had contact with the virus.
“Symptoms are similar to other common viral infections, but like other herpes family viruses, they have a tendency to stay in the bodies ... They may not trouble you, in your day-to-day activity or physical health, but they’re there.” It’s similar to how the shingles virus — which originates from chickenpox virus — stays in the body.
“You might be completely asymptomatic,” Dr. Weinbaum said, “or sometimes you have fever. You never know unless you have an underlying problem. Virtually no one gets super sick from CMV if you have a normal immune system.”
The potential problem with CMV in babies, he said, is when women develop their first infection when they are pregnant. Depending on the trimester, if the baby is infected, there can be problems with severe growth retardation or problems with blindness and hearing. At the worst, he said, “They can die from overwhelming sepsis.”
The CDC says some babies may have signs of congenital CMV infection at birth, such as being born premature; liver, lung and spleen problems; small size at birth; small head size and seizures.
Dr. Weinbaum said the earlier during pregnancy a woman gets her first CMV infection, the higher risk of small head size. “Maybe the risk is 20 to 30 percent.”
Time of infection
Ms. Hoffman said she was told by Marian Michaels, CMV expert at Children’s Hospital of Pittsburgh of UPMC, that she may have contracted CMV for the first time during the last trimester of pregnancy, and then it passed through the uterine wall to her unborn child.
If CMV is passed on to a baby at a later point, during labor and birth and during breastfeeding, there is less of a risk of health problems, according to the March of Dimes.
Dr. Michaels says that CMV, because so many people have the virus, is the most common congenital infection.
It’s so common, that even with 1 percent infections in newborns, that amounts to 30,000 to 40,000 babies a year in the U.S. “It’s still a huge number,” she said. “Most of those babies don’t have problems. About 10 percent have problems at birth; another 10 percent have trouble when they’re older.”
She said women need to avoid becoming infected themselves. Young children who are infected with CMV shed the virus through their saliva and urine.
Richard Beigi, obstetrician/gynecologist and chief medical officer at Magee-Womens Hospital of UPMC, said many women are infected through their work.
“OB providers will ask about occupations. … One of biggest risk factors of being exposed is working with little children,” he said, giving this advice: “Be very careful when you’re changing diapers. ... Be careful how you handle those diapers and products. ... The virus can be shed in those products and in the diapers.”
Mothers, especially those thinking about getting pregnant again, should not share food or drinks with their toddlers. They should wash their hands after diaper changes or use a hand sanitizer. “Be religious about washing hands, and as much as possible, avoid saliva contact,” Dr. Michaels said.
“It’s hard, in general, little kids when they’re sick they shed a lot of virus,” Dr. Beigi added. “It’s not always easy. Understand when kids are sick they want to be held more rather than less.”
A vaccine may someday prevent CMV, just as a vaccine was developed against rubella after an outbreak in the 1960s in the U.S. Preliminary trials are underway as well for a Zika vaccine.
“She’s a miracle”
Mr. Hoffman said now she knows she was at risk 10 years ago when she was pregnant with her daughter Sydney and potty training her toddler son, Hunter, who is now 13.
Today, Sydney loves riding her pony, plays sports and does well in mainstream classes in public school.
But in the days after her birth, doctors in Erie didn’t give Ms. Hoffman and her husband, Clint, much hope. “They said a lot of time CMV kids have to be institutionalized. ... But she’s a fighter,” Ms. Hoffman said.
“In the first year, she just survived,” Ms. Hoffman said. At 10 months her spleen was removed, and Sydney’s health improved noticeably, and she was able to sit up on her own. Her mom credits early intervention with helping her walk by 2½ years and communicating well by 4½, in time for preschool.
Early intervention services with therapists and a good preschool helped Sydney prepare for school, and now she continues speech, vision and occupational therapy. She has liver disease that is being monitored, but otherwise has moved past important milestones of development.
“My advice is if you have a child with CMV, utilize all the services that are available,” Ms. Hoffman said. “We took them; we didn’t want to have any regrets.”
Horseback riding was part of her therapy, helping Sydney’s balance.
“She’ll still doing the exercises when she’s riding. She calls it ‘trick riding,’ ” her mom said.
“She needs a little help with reading and math. She talks, she understands, she can hear, she has some vision issues. She’s a miracle.”
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