Congenital CMV — cytomegalovirus — is the most common cause of disability in newborns.
The Centers for Disease Control reports that it affects 1 in 150 children born in the United States. One in five of those will have permanent health problems as a result. Yet hardly anyone has heard of it.
Polly Lynne Matthews hadn't.
A common flu-like virus that about 60 percent of the population experience as children, CMV often just seems like a bothersome cold.
Matthews contracted it when she was seven months pregnant. Her cold symptoms lasted for a couple of days. She took no medication.
Two months later, after an easy natural delivery, her second child, Liam, now 31/2, was born deaf and with hypotonic cerebral palsy attributed to congenital CMV.
"When health professionals say it's rare, I want to scream it from the rooftops," says the 28-year-old Newport News mother, noting its prevalence. It's estimated that up to 4 percent of pregnant women contract the disease for the first time and are therefore at risk of passing it on to their children in utero.
A simple blood test for the mother can determine the presence of antibodies and whether she has had CMV. However, both the timing and accuracy of potential screenings are an issue. "It's controversial whether to screen all women. The antibody titers can be misleading. They [unborn children] don't have problems unless the mother gets her first infection during pregnancy." says Tom Bass, a neonatologist at Children's Hospital of the King's Daughters, who sees six to eight cases in newborns a year. He adds that "part of the impetus for not having universal screening is that the treatment is very poor. You're not going to reverse the devastating brain effects even if you clear the virus."
Matthews feels that heightened awareness of CMV's dangers would help expectant mothers exercise more caution in avoiding it. "Perhaps I would have been more careful," she says.
A member of the herpes family, the virus is spread by contact with infected body fluids. According to the CDC, contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women; and mothers of young children, or those working with them, are particularly at risk of picking up the virus. Matthews speculates that she may have got it from the playgroup her older son, Jamie, 6, attended.
At the time she didn't know. Healthy adults and children exposed to CMV do not suffer any lasting effects. But when it's transmitted in the womb, the result can be devastating. Only 10 percent of affected babies have symptoms at birth, but another 10 to 15 percent develop symptoms months, and even years, later.
The range and severity of disabilities run the gamut: They include hearing and vision loss, mental disability, cerebral palsy, and the inability to walk or communicate. "Some children are blind and wheelchair-bound. We are really fortunate," says Matthews, as she helps Liam in his "gait-trainer," a special walker that allows him to propel himself. He can also walk holding her hand or a railing but doesn't yet have the core strength to balance himself.
"Mainly we still carry him, "she says of the 35-pound toddler. "He's about two years behind in gross motor skills." Matthews avoids looking at the charts for appropriate age development. Liam's progress has come in fits and starts. His development has been stable for about a year, but she is confident that he will eventually be able to walk by himself.
Though she was not aware of CMV or that she had been exposed to it, Matthews and her husband, Christopher, did know that not all was well with Liam prior to his birth. At five months, an ultrasound technician worried about the appearance of his stomach. Subsequent tests showed that there was no problem. But several weeks later, new tests shifted concern to his brain development. There appeared to be excess fluid and Matthews was scheduled to deliver at Sentara Norfolk General so the baby could get care — they were anticipating the need for a shunt — at CHKD.
Weighing in at 7 pounds 14 ounces after a natural delivery, Liam's body was covered in little red freckles, indicative of a low platelet count. An MRI the next day revealed the extent of his disability, showing certain parts of the brain as underdeveloped and calcium deposits on the brain from scarring. Even before he failed his first hearing test, Matthews knew he was deaf. "Exposure during the third trimester is what results in hearing loss, it damages the nerves," says Brian Butcher, Liam's pediatrician, who continues to monitor his progress. Liam also exhibited an enlarged spleen and was severely jaundiced — all signs of congenital CMV, which was confirmed by a urinalysis test and culture. Still, after five days they left the hospital.
At 2 months old, Liam started physical therapy. When he turned 1, he had a cochlear implant in his right ear. "It's a little bit of overload. He doesn't like having it on," says his mother, noting that Liam has certain autistic traits, such as "stimming," when he claps repeatedly, particularly at bed time. He wears the hearing device all day except for when he first wakes up and at nap time. Since receiving the implant he has speech therapy once a week. "His brother is the only peer he notices and plays with. Jamie's a great big brother interpreting his needs and babble — sometimes to his advantage," she says, laughing.
Last fall, at 21/2, Liam started attending a half-day special ed program through Newport News Public Schools and made great progress. "It has done wonders for him," says Matthews. He will resume attendance this fall. She communicates with him through "baby signing," which is a modified American Sign Language method. She also has special communicator tools at home with a switchboard and pictures. "My hope and dream one day is to hear him say 'mama' and for him to walk. He surprises us just when you don't think he's going to do it."
Matthews was studying to be a registered nurse when Jamie was born. "Now, with all our medical appointments I don't have any interest in it any more," she concedes. She has found her greatest support through a network of more than 100 other mothers on Facebook. "They have tips on eating, walking, hearing, communicating. There was so much misinformation out there on the Internet," she says.
And now she is the regional president of http://www.stopcmv.org, a virtual support group. She is trying to get the word out to pregnant women about the dangers of CMV. "If someone had told me. They take enough blood — just ask for one more test," she urges, cradling Liam in her arms. "People are suffering because they don't know about it."
CMV, cytomegalovirus, is a common virus that affects people of all ages. Once in a person's body, it stays for life. In healthy children and adults it has no lasting effects.
Congenital CMV: The greatest danger is to the unborn children of pregnant women who contract CMV for the first time, a primary infection. For affected newborns, congenital CMV can cause a host of disabilities from deafness to mental disability. One to two babies of every thousand born in the United States have lasting CMV-related impairments. For information, go to http://www.cmv.org or http://www.cdc.gov.
How to avoid CMV: Wash your hands often with soap and water; do not share food, drinks or eating utensils with young children; be careful about kissing babies, toddlers and small children on the lips and mouth. It can also be contracted from an infected sex partner.
Is there a cure?: The antiviral drug Glanciclovir has shown some promise with hearing loss in infants, but it can have strong side effects. Vaccines for prevention are under research.Copyright © 2015, The Baltimore Sun