Why CMV, the most prevalent viral infection in newborns, is flying under the radar, and why you need to know about it now.
I was six months pregnant, it was the middle of a raw Manhattan winter and all I wanted to do was escape to a Caribbean island. But Zika just hit the news like wildfire, ‘microcephaly’ became a household term, and Iceland turned into our best babymoon option.
So, I sat tight — resigned to be snowbound, holding my sniffly two-year-old daughter on my lap as we passed the winter singing songs, wiping her nose with my hands mom-style, sharing oatmeal and giving her sips of my hot chocolate.
Turns out, while I was rearranging travel plans to avoid bug bites there was a greater risk brewing for my unborn son in the form of my sweet, rambunctious, booger-y toddler.
The Most Common Virus in Newborns that 91% of Pregnant Women Don’t Know About
As the NY Times reported in last October’s article “CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed” — one of the few national pieces written on the virus — for pregnant women and their infants in the United States, Cytomegalovirus, or CMV, needs to be discussed.
The name isn’t sexy. Its medical-text-book moniker sounds more like a dinosaur breed than something with which you’re likely to be inflicted. Perhaps that’s why CMV is one of the most devastating and poorly communicated diseases to impact pregnant women.
CMV can have the same devastating side effects as Zika when pregnant women contract it through bodily fluids. Think: sharing utensils with your child, wiping that pacifier off in your mouth, changing diapers and then not washing your hands. It affects 1 in 150 children born each year.
The virus presents itself like a bad cold and other than some short-term benign symptoms is usually harmless. Toddlers, especially ones at day care, are a hot zone for CMV which is why this virus is most prevalent in subsequent children. Nearly 80% of people will have this in their system by the time they turn 40. It’s when a pregnant woman is exposed to CMV for the first time while she’s pregnant that the virus can turn devastating and cause life-altering side effects in a fetus including microcephaly, hearing loss and mental disabilities.
None of My Friends Knew About CMV When It Came Barging into My Life
I was a needle-averse child who once had a waiting room full of patients cheer me on to get a shot before threatening to bite a doctor and being held down by a team of nurses. I was about 9 when this occurred — embarrassingly old for this stunning revolt.
Fast forward two and a half decades and the sweet irony is that I only knew of my CMV infection because I just happened to go to an OB practice involved with a CMV trial, and I just happened to agree to donate an extra vial of blood to the cause — as I proudly told the nurse how I bravely overcame my fear of needles (a story she heard 10 times already because I nervously tell it every.single.time I give blood).
Here’s how my perfectly boring pregnancy unfolded into the abyss that is CMV:
11 weeks: Almost at the magical 12-week mark where it’s ‘safe’ to tell the world that you’re pregnant! Also, how far along my pregnancy was when I was asked to participate in a Columbia University research study that would only require donating a vial of blood in addition to the 10 gallons I already had to give. It was my feel-good of the day and I assumed that it would anonymously be sent off and I’d never hear about it ever again. I didn’t think about it for one second, until …
22 weeks: Sweet second trimester. I finally had a cute little belly. I was making big decisions like: which double stroller would fit through the door of our NYC apartment. My biggest pregnancy frustration being that strangers STILL wouldn’t let me sit on the subway (that’s a whole different article). This was also the week that two researchers came into my routine OB appointment to say “your test came back negative. Would you mind doing a follow-up blood donation as part of the research?” This was a big one because I’d be getting poked for no other reason but to help. I almost said no. Instead I thrust my arm out as I told the nurse about this one time when I was 9 …
Clueless: What my husband and I were when we heard this, because “negative” has always been associated with “great!” when hearing that I didn’t have a disease. Right?! Turns out negative was just that.
Since I had never been exposed to CMV I was at risk of getting it for the first time while I was pregnant — the CMV danger zone.
1–4%: The chance that I would get a primary CMV infection during pregnancy. Though due to so many unreported cases of asymptomatic CMV, this statistic is likely quite skewed.
0: My luck, as I found out a few weeks later that I came up positive. Meaning that I was infected at some point between my 11th and 22nd week of pregnancy.
What followed this news was the worst doctor’s appointment of our lives. My husband and I were tossed all sorts of stats, probabilities, vague options and a long wait:
· 40% chance it’ll get passed to the baby
· 10% chance that if it does, something detrimental could come of it
· Like Zika, there’s no known cure — but the chance to be part of a trial that could give me antivirals shown to have promise in preventing the virus going to the baby or lessening effects of the disease
· 50% chance that I won’t get the antiviral because half the people in the trial get a placebo
· A month-long wait for an amnio to see if it was passed to the baby, as the infection was recent and it would take at least that long to make its way to the fetus and get accurate results
· Another week-long wait to the amnio results
· The wrenching understanding of what a late-term abortion meant as many people with this information have opted to end the pregnancy — an option that was tossed out to us with no definitive evidence that the baby would be ill
We left in silence. We cried. A lot. My husband has always been my rock, he was through this too, making the sight of him sobbing over this news heart wrenching. I went from calling my growing bump ‘Oliver’ — the name we chose for our little guy — to referring to it as ‘the fetus’ and ‘the baby’ as I distanced myself from him. I stopped researching double strollers. I put our crib delivery on hold. I started mourning something that was still very much alive and growing in my belly.
I got angry — why didn’t anyone tell me that not sharing food with my daughter could’ve potentially been the difference between a very normal life and an incredibly trying and unpredictable one?
Then we jumped into action and suppressed our emotional pain by focusing on odds, stats and numbers. We talked about best case. We talked about worst case. I grew a new and fierce sense of protection, often covering my stomach with my arms in an extra layer of armor as I realized that if I didn’t fight for him, who would?
Through a few Google searches and blind emails we put together a CMV sounding board of researchers and PhDs who have spent years studying this virus. The compassion and knowledge they bestowed upon us — complete strangers — was incredible. They infused a sense of hope and guidance that was otherwise lost as we attempted to navigate through little information, few definitive answers and raging emotions.
We ultimately decided to join the trial, which meant going to the hospital and having a 6-hour IV drip. I got one dosage in ahead of my 3rd trimester amnio.
Waiting to hear if our son would be healthy
The days following the amnio were excruciating. When a week finally passed, we called to see if our results were in, only to be told that yes, they were, but our contact wouldn’t be in the office for another 45 minutes to give them to us. And so, the wait continued as I sat at my desk, nauseous that the news waiting for me in someone else’s inbox could drastically change our lives.
Oliver was negative. The good kind of negative. This was confirmed upon his birth as well. I don’t know, and won’t know until the trial is over in a few years, whether I received the antiviral medication or not. I will never know if that trial saved my son’s life — but there’s a chance that it did.
What we do know is that we dodged a bullet. We know that that this could’ve been the start of a new and very challenging life. We know that had I not been at an OB practice that was one of a handful of US hospitals participating in this study that I never would’ve known what my body was fighting and that I could’ve gone through my entire pregnancy in an ignorant bliss only to be slammed with confusing and unexpected news upon Oliver’s birth … or his second birthday. We know that I may not have dealt with any of this had I been informed of CMV from the onset of my pregnancy.
Like Zika, CMV has no vaccine. But just knowing that the virus exists means that women can take preventative measures that have been shown to statistically and significantly reduce the likelihood of contracting it.
Friends planning to have babies often ask me what they should do. Practice prevention. Pregnant women are warned to avoid sushi (parasitic infections), deli meat (listeria), cat litter (toxoplasmosis), multiple regions of the world (Zika). Why? To make tiny sacrifices if it means increasing your odds at having a healthy baby at the end of those nine months. Instances of those situations plaguing pregnant women are significantly less, combined, than of CMV. These three steps should be added to pregnancy recommendations:
1) Wash your hands. I know, we all think we do this already. But really, wash your hands. CMV is spread through bodily fluids, so when changing diapers, or catching sneezes wash, wash, wash.
2) Now’s the time to teach your toddler not to share. If they’re anything like my toddler, this should be an easy one. Don’t share utensils. Don’t clean pacis off in your mouth. Don’t share drinks or food.
3) Keep toddler smooches to their heads. Avoid kissing them near their mouths. Hug and cuddle the heck out of them as much as you want.
My pregnant friend Lauren returned from Mexico covered in mosquito bites a week before morning talk shows transformed into Zika watch. She spent the rest of her pregnancy monitored and on-edge. Even if she had been diagnosed (which she was not), her options would be dire and minimal.
Knowledge and prevention have been key in protecting pregnant women from that virus. The same must become common practice for CMV.
I want to turn that 9% of pregnant women who have heard of CMV into 99%. I want more stories like Oliver’s.
For more information on CMV prevention and what to do if you’re diagnosed visit the National CMV Organization’s site at www.nationalcmv.org.