Maddison’s Story

Pregnant with my second child, I thought I had it in the bag. 

I had been through this before. I had endured 26-hour labour that ended up in a c-section, got through those postpartum blues and exclusively breastfed through thrush and nursing strikes. This time around, my learning curve was going to be much smaller. 

Our second daughter arrived in early May and those first two weeks I had with her were ignorant bliss. I truly understood what people mean when they say, “my heart is full”. I had help and was recovering much faster this time. I felt, dare I say, like a bit of a supermom. 

That bubble unexpectedly burst in a moment a month later. Our daughter failed her newborn screening test as part of the EHDI program. We were referred on for an ABR. As I held our perfect sleeping newborn in a dark quiet room soaking in uninterrupted cuddles, the audiologist’s clicks and calculations seemed to take forever. I thought to myself, she only has fluid in her ears because she was breach – what is taking so long!? After 3 hours, the audiologist finally turned to me and said, “your daughter has sensorineural hearing loss in her right ear.”

In the weeks and months following that appointment, I slowly put together the pieces and implications of what it means to have permanent hearing loss. This means that she will need a hearing aid for life. It means that her speech and development could be affected. It means I am a mother of a child with (uncomplicated) special needs. Enter a new learning curve – the world of hearing loss, audiograms, speech bananas, types of hearing loss, communication methods, hardware choices and how to keep that damn thing on her head!? 

The newborn hearing screen has only recently been brought back in Alberta, and my older daughter was not tested at birth. She was eventually tested (and passed), and Maddison’s hearing loss was only in one ear, so genetics were ruled out. It ate away at me. What did I do to cause this? Was it that non-alcoholic beer I drank? Or maybe the cat walked on the counter and passed on toxoplasmosis? How could I be so irresponsible? 

Researching causes of hearing loss, I came across Cytomegalovirus (cCMV). It is a common virus that 50-80% of the population has and it is typically harmless. cCMV is the leading cause of congenital disabilities. Its effects vary from nothing at all, to hearing loss, to cerebral palsy, to death. The virus is so common that infants must be tested within the first 3 weeks of life to confirm that they were born with it. I thought our window had passed and we would never know. 

CMV is related to the viruses that cause chickenpox, herpes and mononucleosis. It is spread through bodily fluids and is commonly spread amongst toddlers. We had potty trained our first child while I was pregnant, and I routinely ate off of our daughter’s plate. Something inside me knew it must be cCMV. We were being followed by a pediatrician who had just finished her infectious disease specialization and she confirmed cCMV was a likely cause. 

I started contacting different CMV organizations and researchers around the world for their advice and expertise. Research on CMV is still emerging and this is one of the reasons why there isn’t enough awareness. A volunteer from the National CMV Foundation in the US told me to get her metabolic screening card tested. I had no idea this was an option! I called our midwife and bless her, she got the card sent off to Ontario – where they had just introduced a CMV screening program. Unfortunately, false negatives are possible when testing this way, but it still gives parents a chance to find out what caused their child’s loss. The best news is they hold on to those cards for 15 years!

We got a positive result a few weeks later, and I immediately went into fight or flight mode trying to get her seen as quickly as possible by infectious disease at the Alberta Children’s Hospital. The prognosis for not treating children with cCMV-related hearing loss is that they will likely go on to completely lose their hearing. I was still grieving her partial loss of hearing and I wasn’t going to let her lose it completely without a fight. 

There is an antiviral treatment that has demonstrated improved outcomes for children with cCMV. The standard of care is to treat infants with this antiviral within the first 4 weeks of life. That is why our pediatrician had never mentioned testing, as she thought we had caught it too late. This antiviral medication suppresses bone marrow function, which increased the chances my daughter could be seriously harmed by a bacterial infection. Weekly, then monthly blood tests meant she could safely take the antiviral and she was able to successfully finish the course. 

How many of you or people you know have changed travel plans because of the Zika virus? What baffles me is that everyone knows about Zika, but there is another virus right here that only 9% of woman know about. 

CMV is the leading cause of infant disabilities. 

While there are no fool proof ways to prevent transmission, there are ways you can reduce your risk while pregnant. Don’t kiss your child on the mouth, don’t put their soother in your mouth, don’t eat off their plate and wash your hands thoroughly after helping them with the toilet. 

In today’s world, we already have a lot to worry about. My intention is not to add to that plate, but simply to raise awareness. 1 in 4 women who are pregnant and have a young child in the home will get CMV while pregnant. Of that, 80% of those kids who get CMV while in utero will be absolutely fine. It is a relatively small percentage of the population that are affected, but the consequences are life changing. It is worth knowing about and taking precautions against. If you have been previously exposed, it is possible to be re-infected. This is an area that is still being researched.   

As mothers, we want to know that at the end of the day we have done everything we can to ensure our kids’ success in life. While I will never know for certain, and I can’t blame myself for something I did not know about, it is possible that my actions are what caused my daughter’s hearing loss. So the next time someone brings up Zika, please also bring up CMV.

Mothers have a right to know.