Do you know about the most common virus transmitted to a mother’s unborn child? Congenital cytomegalovirus (CMV) is as common a cause of serious disability as Down syndrome.
Congenital cytomegalovirus infects people of all ages. Most people have had CMV by age 40. The majority of them experience no symptoms, as the virus tends to be "silent." However, CMV can cause disease in unborn babies and people with weakened immune systems. It’s most likely to occur in a baby when the mother is infected for the first time during a pregnancy. This is known as a primary CMV infection. Approximately one in 150 children is born with congenital CMV, and about one in 750 children develops permanent disabilities as a result of a congenital CMV infection.
My 20-week sonogram with my son Noah showed an echogenic bowel, or bright spots on his bowel. I took a subsequent blood test, which revealed I had been exposed to a primary infection of the cytomegalovirus. When Noah was born, he looked like any other healthy eight-pound newborn. This is despite the fact that he was delivered by his dad on the side of the Northern State Parkway en route to the hospital (an unrelated but exciting side note). Noah spent three-and-a-half weeks in the hospital’s neonatal intensive care unit and received antiviral medication. During this time, additional testing revealed hearing loss and calcifications in Noah’s brain. He has since been diagnosed with developmental delays, a seizure disorder and vision loss.
According to www.stopcmv.org, approximately 90 percent of all infants who are infected with CMV prior to delivery are born without symptoms of the virus, but they may later develop disabilities. The 10 percent born with visible symptoms may experience varying degrees of abnormalities. As much as 20 percent of babies born with symptomatic CMV infection may not survive, and CMV-related disabilities can range from hearing loss, vision impairment and mental retardation to coordination problems.
Pregnant women are at high risk for CMV infection, especially mothers who already have small children in the home and those who work with small children. Young children are more likely to have CMV in their urine or saliva than older children or adults. Transmission of CMV occurs through close contact with bodily fluids. Yet, the chance of getting a CMV infection from casual contact is very small. I was not aware that I had never contracted CMV prior to my pregnancy and that I was at risk, not only because I had a toddler, but also because she attended full-time daycare.
As a parent of a child who was born with congenital cytomegalovirus, I feel very strongly that every woman who is pregnant or planning to become pregnant should be informed of her risk for exposure and the actions that can be taken to prevent transmission. All women should be tested to determine if they have had CMV prior to pregnancy. And all women should be aware that having a toddler, especially one enrolled in a daycare or nursery setting, puts women at an increased risk.
To inform others of the devastating virus, Janelle Greenlee, a California mother of twins infected with CMV, started a national nonprofit called Stop CMV — The CMV Action Network in 2003. The CMV Action Network is comprised of families, friends and medical professionals affected by CMV. It is committed to public education efforts and aims to help others become more informed about the virus and take steps to prevent it. Stop CMV’s Web site, www.stopcmv.org, provides a wealth of information and a much-needed avenue of support for families facing a new diagnosis or raising children with CMV.
As a Long Island representative for Stop CMV, I hope to increase the public’s knowledge of CMV. In May, I organized an event at Adventureland Amusement Park. It provided an opportunity to inform the public and gather CMV families together. Having the opportunity to connect with other CMV families is a vital component for support. In addition to raising awareness, funds were also garnered for research and advocacy.
By expanding awareness with events and advocating for Stop CMV, I aim to decrease the number of babies born with this virus.