I was 7 months pregnant with my second baby when we went into shelter in place for coronavirus. I had experienced an uneventful pregnancy with some of the text-book morning sickness and fatigue but overall, felt great.
At the end of May, we welcomed our gorgeous and perfect baby girl, Melanie. My husband was able to join me at the hospital, my delivery went well, and I felt so relieved that none of us had been affected by coronavirus.
During the hospital stay, Melanie failed (or ‘referred’ as they call it) her newborn hearing screen. We were concerned but assured by multiple hospital staff that this happens all the time. In the newborn haze, I barely noticed a nurse collecting a mouth swab from Melanie for a virus I had never heard of before - something they throw in just for good measure when newborns fail their hearing screen.
I wasn’t worried. We had avoided coronavirus, how would she have caught anything else?
Melanie was diagnosed with Cytomegalovirus
It wasn’t until five days after leaving the hospital and settling back in at home that we received the test results for that obscure virus. It was called Cytomegalovirus - and the result was positive. We were quickly rushed to have a second test to confirm, and those results were positive too.
To say this was a shock would be an extreme understatement. It was a true nightmare scenario. We had done all offered pregnancy testings and all screenings - how did this happen? And why had I never heard of this “common” virus before?
The next few weeks were fraught
What should have been the happiest weeks of our lives welcoming the fourth member of our family became a whirlwind of medical tests: hearing tests, eye exams, ultrasounds, weekly blood draws, and CT scans.
The tests concluded that CMV had caused permanent damage to both of Melanie’s inner ears (she would need hearing aids), as well as liver inflammation. For the next six months, Melanie was then put on a twice a day dose of a strong antiviral in the hopes it would halt any further hearing loss caused by CMV. While on this antiviral she had to have bi-monthly blood draws and we did monthly well-checks with our pediatrician to make sure she was meeting all milestones.
Living with an unpredictable future is our family’s new reality
Melanie’s diagnosis and subsequent treatments affected our entire family: My husband sobbed as we administered Melanie’s first dose of antiviral treatment; I’m now aware of more pediatric subspecialties than a mother of young children wishes to be aware of; and our 2-year-old would ask ask if Melanie was ‘going to doctor’ whenever we left the house with her.
Fast forward one year and Melanie has truly amazed us with her strength and playfulness. She was fitted for her pink hearing aids at 4 months old and is a now a happy, bubbly 13 month old.
If I compare the first year of her life to my son’s, CMV was a thief of the simple joy of the unexpected in the first year. With my son, I never stressed about when he would meet milestones or how he compared to other children. With Melanie, everything was under a microscope and any delayed milestones (even by a day!) led to another trip to the pediatrician or referral to a specialist.
Throughout all of this, our family has become stronger in many ways. Mostly with the new ability to live life with constant unknowns and to be prepared for the unexpected. CMV is a virus that can cause progressive hearing loss - so, though Melanie was lucky to be diagnosed and treated early, we know we will need to keep a constant watch on her hearing.
Only 9% of pregnant women have heard of Cytomegalovirus
Yet 100% are at risk of contracting it. CMV is the most common viral infection that infants are born with in the United States. In fact, 1 in 200 are born with a CMV infection. But so many of us have never heard of it. It’s what’s known as a silent disease, meaning most people who are infected have no signs of symptoms. Most pregnant women, like myself, are never even aware that we have CMV.
In a lot of ways, I wish I still didn’t know what Cytomegalovirus was, but as we’ve all learned over the past year is that the best possible outcome comes from educating ourselves and those around us. This is the reason I’m sharing our family and, mostly, Melanie’s story - in the hope it helps another mama out there.