Guest Blogpost: June is CMV Awareness Month

Megan Goodbar  • 06/17/2021

It’s time to go! Dinner’s ready! I love you so much!  After five years of being a mom I’d said phrases like these countless times, without thinking twice about it.  Providing direction to my children, showering them with loving encouragement, spending hours reading books aloud to them, and just talking about their day; I’d never really thought about how important spoken language was in our everyday life or considered what a world without sound would be like.  That all changed in December of 2015 when my husband and I stood in the hospital NICU as a nurse explained to us that our daughter Annabelle had not passed her newborn hearing screening.

Annabelle had been measuring much smaller than my boys did in utero, but I’d had an otherwise seemingly normal pregnancy.  Two days before Christmas, at 35 weeks gestation the doctors decided that because of decreased fetal movement they needed to deliver her immediately and we met our precious girl that evening.  Within her first week of life, Annabelle was diagnosed with congenital cytomegalovirus or cCMV for short.  Neither of us had ever heard of this virus, and to be honest it didn’t seem like much of the hospital staff had either.  We were handed print outs that described what kind of damage this virus can do to a fetus, some of which we already knew affected Annabelle. She had calcifications in her brain, low platelets, petechial rash, and jaundice.  As if that wasn’t enough to terrify a mother, we were told that cCMV can cause hearing loss, vision loss, and developmental delays.  I remember sitting in a daze wondering what kind of life this tiny girl had ahead of her.

So as the nurse stood there, struggling to keep eye contact with us as she informed us about the results of her newborn hearing screening, we weren’t totally shocked, but I can say that we were in utter disbelief that Annabelle might not be able to hear.  Would she never hear us tell her we loved her?  Would she never be in the ballet class that I always dreamed of for my daughter?  The nurse immediately tried to reassure us by telling us that she might not be fully developed yet, or she might have fluid in her ears since she was born via c-section.  They would test her again in a couple of days. 

A different nurse was on duty when we found out that she had failed her hearing screening again.  I know she felt for us as we struggled to deal with the huge diagnosis that we’d already been given and in her effort to remain supportive she told us that she would “get our girl to pass that test!”  They would test her a third time in a couple of days.  I appreciated her spirit and encouragement, but how many times would I need to be told of her failure?

Annabelle did not pass her third newborn hearing screening in the NICU and was officially diagnosed with profound hearing loss at one month of age after a sleep deprived ABR.  It was in that moment that we fully realized she would never naturally hear us call her, tell her we loved her, sing her lullabies, and we could begin to grieve over the loss of what we expected her life to be like.

Annabelle was bilaterally implanted with cochlear implants at 10 months of age and heard her very first sound at 11 months old.  A few months after she was implanted her neurologist reviewed her MRI results with us.  Not only did she have the calcifications, but she had enlarged ventricles, areas of dead brain matter, and a cyst on the left side.  Based on his findings, he didn’t expect Annabelle to ever walk…but she was already cruising.  Our girl had already shattered the glass ceiling of expectations.  We were told to keep her in early intervention and that there may be an intelligence gap at some point.

Annabelle is now five and a half and is a smart, sweet and sassy girl.  She can hear me tell her that I love her, loves listening to music, and dancing.  She is mainstreamed into her local elementary school and has speech 2x a week, physical therapy 1x a week, occupational therapy 2x a week, assistance from a resource teacher at school daily, and a teacher of the deaf that visits her classroom to work with her each week.  It has been a long road that has included a LOT of therapy and hard work for Annabelle and frustration, worry, and tears for me…but she is thriving.  She is perfect.

I wish that I’d been educated about congenital CMV when I was pregnant.  It is a common virus that affects 1 out of every 200 children…but only 9% of women know about it.  It can cause hearing loss, vision loss, mental disability, microcephaly, cerebral palsy, feeding issues, seizures, and death AND there are precautions that you can take while pregnant to reduce the risk of acquiring CMV: don’t share food, drinks, or utensils, avoid saliva while kissing your child, do not put a pacifier in your mouth, and practice good hand washing.  Talk to your doctor about it, they can screen you before and during your pregnancy.

If there is anyone in your life that is of child-bearing age, please have them check out The National CMV Foundation’s website.  There is so much more to know and they deserve to be educated.