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Shannon Payeur caught the virus when she was pregnant and infected her son. She's now trying to save others from feeling her family's pain.
Her son, 1-year-old Maximus Payeur, looks like a typical baby, but he can't eat solid, he's going deaf, and he has brain damage.
"The hardest part was the brain. The doctor was so kind to tell me that my son's brain was like Swiss cheese," said Payeur.
More than 30,000 babies are born with CMV every year. It's a leading cause of congenital deafness. In about 15 percent of cases it leads to neurological problems.
"I had never heard of CMV," said Payeur.
The virus is spread through bodily fluids. Most of us can fight it off, but to a pregnant woman who's never been exposed, the results can be devastating.
"It is the most common infection that occurs in pregnant women, causing damage in the babies," said Dr. Kathryn Edwards from Vanderbilt University Medical Center.
Dr. Edwards is working on a vaccine similar to the HPV shot, a preventive injection given to teenage girls.
Meanwhile, Payeur is working to spread the word.
"You need to research CMV. You need to ask your doctor to test you," said Payeur.
As many as 70 percent of children in daycare have CMV and are highly contagious. Pregnant women in contact with them should wash their hands, carefully dispose of diapers and tissues, and avoid sharing glasses and utensils with young children.
"It's just really hard because you don't know what CMV can do to your child," said Payeur.
She believes sharing her story will help thousands of other soon-to-be moms.
CMV usually doesn't come with any symptoms, so it's difficult for women to know if they've been exposed to it. Doctors say women planning a pregnancy can have a blood test done to see if they're at risk.
At present, there's no approved treatment for CMV.
WEB EXTRA INFORMATION: A DANGEROUS VIRUS
WHAT IS CMV?:
Cytomegalovirus (CMV) is the most common congenital infection in the United States. According to the Centers for Disease Control, between 50 and 80 percent of adults in the U.S. will be infected by CMV by the time they turn 40. CMV is linked to the herpes family of viruses, which also included chickenpox, fever blisters and genital herpes.
The virus can lie dormant in a person and appear at a later time. It is spread through direct contact with an infected individual and is found in urine, saliva, semen and other body fluids. A mother can also infect her fetus or newborn. Once infected, CMV will stay in the body forever. Research shows between 3 and 11 percent of adults and half of healthy children excrete the virus in their urine or saliva, but once outside the body, it dies quickly.
The virus is 'silent,' meaning most children and adults who have it don't show any symptoms. When the virus does present itself, it is usually through fever, swollen glands and or lethargy. Symptoms may be more severe in those with a weakened immune system, such as in AIDS or chemotherapy patients.
Roughly 10 out of every 1,000 babies born in the U.S. is infected with CMV, however nine will not show any symptoms while one may have a damaged nervous system or developmental disabilities.
DIAGNOSIS AND TREATMENT:
There are laboratory tests that look for the virus, but they are said to be expensive and not widely available. Physicians can administer a blood test to diagnose a person but results are not always accurate. While there is currently no vaccine for CMV, researchers are working to develop one.
Experts say the best way to avoid the infection is by practicing good hand washing and by wearing protective gloves when handling linen or clothing exposed to feces or urine. Experts recommend pregnant women wash their hands after caring for patients or children, especially when handling dirty diapers or coming into contact with a child's urine or saliva. Experts say it is not routine to test for CMV during pregnancy, and that a pregnant woman should talk to their physician regarding the virus.