Congenital cytomegalovirus (CMV), while many have never heard of it, is one of the most common congenital conditions. In fact, it is THE most common infectious cause of birth defects, infecting 1 out of every 200 babies born. Infection in the infant is caused by in utero exposure. CMV is a very common childhood illness, often manifested by typical upper respiratory symptoms or no symptoms at all. Unless tested, most would not even know they have been infected! Infection is spread through bodily fluids, such as saliva or urine. Caregivers, including pregnant women, may become infected by being exposed to those contagious fluids. If a woman is infected during pregnancy there is a risk of passing infection through the placenta to the developing baby. If a baby is born with this infection, it is called congenital CMV. Congenital CMV can cause serious long term health impacts, including hearing and/or vision loss, developmental delays, motor delays, microcephaly (small head), or seizures. One in 5 children born with congenital CMV will have one or more of these long term effects. 

A strong multidisciplinary team is vital in maximizing the quality of life for children living with effects secondary to congenital CMV. This includes occupational therapy, physical therapy, speech therapy, ophthalmology, and audiology. Some children may require additional support including involvement with neurology, a feeding team, or hematology. The range of severity is significant. Regardless, parents are often left managing a large team of specialists, taking on a new role as case manager. It may be helpful to connect with a social worker from your child’s primary team. He/she can provide individual resources and help to manage the extensive scheduling, paperwork, and learning plans for your child. Children living with congenital CMV can live happy and meaningful lives full of opportunity. Your team is on your side to provide you with all of the tools to help reach your child’s greatest potential. 

Check out some of the resources below for additional information. Experienced caretakers of children with congenital CMV, please share in the comments what your best advice is to new parents who may have a child born with CMV?