Spreading Awareness: Lindsay’s Story

By Lindsay Craig

Pregnant with my second I thought I had it in the bag. I had been through this before, endured 26 hr labour that ended up in a c-section, got through those postpartum blues, exclusively breastfed through thrush and nursing strikes- my learning curve this time 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 the quick short test they do in the hospital and we were referred to the audiologists for further testing. As I held our perfect sleeping newborn in a dark quiet room soaking in uninterrupted cuddles the audiologists 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 turned to me and said your daughter has a sensorineural hearing loss in her right ear.

In the weeks and month following I slowly put together the pieces and implications of what it meant to have a permanent hearing loss. This means she would need a hearing aid for life, it means 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 wasn’t tested. Once she passed her test and because my daughters loss was only in one ear, genetic causes were probably off the list. It ate 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 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, it’s 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, it is commonly spread amongst toddlers. We had potty trained our first child while I was pregnant and I routinely ate off of our daughters plate. Something inside me knew it must be cCMV. We were being followed by a pediatrician who had just finished her infectious disease specialization that told me 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 is one of the factors why there isn’t enough awareness. A volunteer from the National CMV foundation in the states 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 have just introduced a CMV screening program.

We got a positive result a few weeks later, and once we did I went into fight or flight mode trying to get her seen as quickly as possible by infectious disease at the Alberta Children’s Hospital. There is an antiviral that has demonstrated improved outcomes for children who have received it. The standard of care is to treat infants with this anti-viral within the first 4 weeks of life- that’s why our pediatrician had never mentioned testing as she thought there was nothing that could be done about it now. The prognosis of not treating children with cCMV with just hearing loss is that they will likely go on to completely loose their hearing. It’s worth a shot right?! The antiviral suppresses their bone marrow function, which increases the chances my daughter could be seriously harmed by a bacterial infection. Weekly, then monthly blood tests mean she can safely take the antiviral and luckily for us she has been doing well on it.

How many of you or people you know have adverted 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.

It is the leading cause of congenital disabilities. Let that sink in.

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 todays world we have a lot to worry about. I am not trying to add to that plate, rather I hope for an awareness. 1 in 4 woman who are pregnant and have a smaller 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 very 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 give our kids the best possible success in life. While I will never know, and I can’t blame myself for something I did not know about, it is possible that my actions are what caused my daughters hearing loss. So the next time someone brings up Zika, please also bring up CMV. Mothers have a right to know.

cCMV is a complicated world, and research is still ongoing. For more information please go to www.cmvcanada.comor https://www.nationalcmv.org/. There is a facebook group for parents called Alberta CMV support group if you or anyone you know has been affected by this virus.

 

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