This is a story that is close to my heart. Eight weeks after my youngest daughter Joni was born in the fall of 2019, I got a call from Sick Kids Hospital. When I answered the phone, I was tired, covered in spit-up and had no idea what the nurse was talking about.
It turned out I had consented to enhanced screening at some point during Joni’s routine hearing test shortly after birth. I remember signing a form but still had never heard of CMV (Cytomegalovirus).
As the infectious disease nurse started naming off the possible side effects including permanent hearing loss, motor delays, learning disabilities, blindness, etc., I was terrified. Our teeny-tiny baby could be facing a world of challenges. I started to cry.
During that conversation, I also learned CMV was a common virus that might give you and I the sniffles but for some reason it is damaging to a developing fetus. The virus spreads through urine and saliva and because I had a toddler in daycare during my pregnancy, I was at a higher risk of becoming infected. Again, I was stunned.
If someone told me about this — my doctor or midwife — I would have diligently washed my hands pandemic-style and resisted kissing my adorable toddler on the mouth; I would have at least tried to keep my baby safe in the womb.
Every year in Ontario more than 900 babies are born with cCMV (Congenital Cytomegalovirus) and one in five go on to have permanent hearing loss and developmental disabilities.
While most babies like my daughter Joni are asymptomatic at birth, others are born with signs.
Alexa Begy tells me she knew right away something was wrong with her daughter Grace.
“She wouldn’t wake up to eat, she went jaundice really fast and she was tiny. They did a spinal tap and found the virus was in her brain and spinal fluid,” Begy recalls.
At five days old, Grace was diagnosed with congenital CMV and eight months later she could no longer hear.
“I will never forget sitting in the audiologist’s office and she said your daughter has severe hearing loss. I was shocked, just shocked.”
– Alexa Begy
Calcium deposits were also found on Grace’s brain, a common symptom of CMV and likely the reason it took her two years to take her first steps.
Begy says she had no idea CMV existed.
“I didn’t know that was a thing, I had no idea babies could get viruses from moms, I was really confused as to why I had never heard of it before.”
Grace, now eight years old, is a thriving grade 3 student. She got her first hearing aids at nine months, followed by cochlear implants, and has made extraordinary strides through intensive therapies.
Ontario is a now world leader with CMV screening in newborns. In July of 2019, a pilot project that offered enhanced testing under the infant hearing loss program was fully implemented, giving asymptomatic children a better chance at early detection and intervention.
This is how my daughter Joni was detected and for that I am grateful but why is this virus not being discussed with women by their health care providers? Whether it’s lack of awareness and education or that doctors simply do not want to cause panic because there is no vaccine or treatment, Alexa and other CMV moms I’ve been talking to believe knowledge is power and this is something women should know.
My family is thankful everyday that our sweet little Joni appears to be in the percentage of children who are unscathed by the virus and that she is being closely monitored by an amazing team of specialists but the effects of CMV can be progressive so we might not know the true impact for years to come.