Dorothy

"Dorothy’s Congenital Cytomegalovirus results came back positive.” That single sentence changed my entire outlook on motherhood and what it meant to raise a child.

I had a totally and unequivocally normal pregnancy. A touch of morning sickness in my first trimester was nothing compared to the Mono-like symptoms a Congenital Cytomegalovirus (cCMV) positive pregnancy typically brings. At 35 weeks gestation, my water spontaneously broke and I gave birth a few short hours later to a healthy, albeit small, baby girl that we named Dorothy.

Because of her early birth and Apnea of Prematurity, we stayed the Special Care Nursery (SCN) for 14 days. While there, Dotty’s hearing test results showed an unresponsive left ear and we were referred out for further testing. Because of the hearing loss, her SCN doctor recommended testing her cCMV. We were assured that this virus was very rare and because Dorothy did not have the other symptoms of cCMV, it was extremely unlikely that she would test positive. It was only later that we learned how extremely common CMV was — more common than Down Syndrome, Spina Bifida, and Fetal Alcohol Syndrome.

The days passed and Dorothy grew strong enough to be discharged. The results for the cCMV test, however, were never passed along to us. It took three weeks before our pediatrician tracked down the results. She called with the news; “Dorothy’s cCMV results came back positive.”

Our Early Intervention team was at the house when I got the call and the one piece of advice I was given was “Do NOT Google ‘cCMV’.” I, of course, did not heed any of their advice and I dove head first into research about cCMV and came out the other end terrified of the prognosis. Children born with cCMV could have liver problems, lung problems, seizures, progressive hearing loss, mental disability, cerebral palsy, and progressive vision loss.

I felt like I was hit by an eighteen wheeler. We hit the ground running, though, and started seeing an Infectious Disease doctor at Boston Children’s Hospital who prescribed a seven month course of a powerful antiviral medication that would help Dorothy’s body combat the virus and hopefully stop the progression of her hearing loss.

Fortunately, Dorothy’s MRI showed no brain damage as a result of cCMV. However, as we get close to her first birthday, her hearing in her left ear has been almost totally destroyed due to the virus and her hearing in her right ear is unstable. She wears a Bone Anchored Hearing Aid (BAHA) on a head-band to provide her auditory access to her environment and we use American Sign Language in the home and out in the community to ensure she isn’t missing any language opportunities.

I never imagined that my child’s life would be impacted in this way, by a common virus that I had never heard of, but with the help and support of the multitude of agencies surrounding our family, Dorothy’s life will be full and she will have many success stories to share in the future.

-The Weems-Sheppard Family


This information is provided by the Universal Newborn Hearing Screening Program within the Department of Public Health.