What if pregnant women had to avoid their toddlers instead of mosquitos?
Why the most prevalent viral infection in newborns is flying under the radar, and why you need to know about it now.
What if I told you there’s a virus with the same devastating side effects as Zika affecting 1 in 150 children born each year — only instead of avoiding mosquitos you have to steer clear of that sweet rambunctious toddler that you tuck into bed each night?
The name isn’t sexy. Its medical-text-book moniker sounds more like a rare dinosaur breed vs. something you’re likely to be inflicted with. Perhaps that’s why Cytomegalovirus (CMV for short) is one of the most devastating and poorly communicated diseases to impact pregnant women.
To put it in more dire terms: It is the #1 viral infection that US infants are born with that 80% of us have in our system … and only 9% of pregnant women know about.
Here are some other quick stats designed to scare the crap out of you:
- When CMV is passed from a woman to her baby in utero it can have some of the same effects that Zika does including microcephaly, hearing loss and mental disabilities.
- CMV is the number one source of non-genetic hearing loss in children.
- 90% of babies born with CMV will show no obvious symptoms — they can take up to two years to reveal themselves. These women had a seemingly healthy pregnancy, delivery and baby. This means that when prevention can be most effective, either in utero or right after birth, the window of opportunity is missed.
- Symptoms rival that of a crappy cold: fever, sore throat, fatigue — easily overlooked in exhausted pregnant ladies (toss in a winter pregnancy when colds are prevalent, and it’s virtually impossible to spot).
- Toddlers are a breeding ground for CMV (which is generally not harmful to them). Pregnant moms with little kids are at especially high risk — which is the camp that I fell into. It’s passed through body fluid. Think: sloppy kisses, sneezes into your face, and shared little forks as you finish off their dinner.
- CMV is like the chicken pox — once you’ve been exposed, it lies dormant in your body. It’s basically harmless to healthy adults and kids. But when a woman first contracts it during pregnancy it could result in a detrimental outcome to the fetus.
- What doesn’t exist: research to show exactly what is needed to keep the fetus from contracting CMV when the mom is infected. AND what medicine a mother / newborn can take to stop the effects of it if it is contracted.
- None of my friends with kids heard of CMV. Not one.
So, how did I come to be part of the 9% who heard about CMV?
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).
What unfolded next took a perfectly boring pregnancy and thrust us into the abyss that is CMV.
11 weeks: How far along my pregnancy was when I was asked to participate in a research study that would only require donating a vial of blood in addition to the 10 gallons I already had to give. Sure! It was my feel-good win of the day and I assumed that it would anonymously be sent off and I’d never hear about it ever again.
22 weeks: How far along I was when two researchers came into my routine appointment saying ‘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 out here. I almost said no. Instead I thrust my arm out as I prepared to tell 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 didn’t have CMV previously in my system, I was at risk of getting it for the first time while I was pregnant; thus the primary infection that can be most dangerous to a fetus.
1–4%: The chance that I would get a primary CMV infection.
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 CMV gets passed to the baby
- 10% chance that if it does, something detrimental could come of it
- No known cure — but the chance to be part of a trial that could potentially give me antivirals shown to have promise in preventing the virus going to the baby or reversing / lessening effects of the disease
- 50% chance that I won’t actually get the antiviral because half the people in the trial get a placebo
- A month-long wait for an amnio to see if CMV 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
- Another week-long wait to get 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. And an option I’d only take if I was 100% certain that our child would have no quality of life outside of the womb.
We left in silence. We cried. A lot. I’ve never seen my husband break down the way he did in the following days. That in itself broke my heart. We tried to hold it together in front of our 2 year old. 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. Each kick left a lump in my throat.
Then we jumped into action and refocused our emotional pain into odds, stats and numbers. We made flow charts. We outlined every possible outcome and the scenarios it would take to get there. 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 from my dad (we were still in the early numb days) 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 wanted more than anything for someone to say “this is what you HAVE to do to make this better.” “Here is your course of action.” But it didn’t exist. We were left to guess and make decisions based on broad statistics that weren’t as skewed in our direction as we hoped.
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.
The days following the amnio as we awaited results 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.
He 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 strong 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 would’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.
This last point is precisely why no one is told about CMV — it’s said that there’s no known cure and therefore no reason to alarm pregnant women because the CDC and American College of Obstetricians and Gynecologists (ACOG) can’t agree on a definitive course of action. With figures and stats that scream ‘all women need to know about this NOW’ there are actions that can be taken to lessen your risk for CMV while researchers scramble for the resources to find a cure.
Friends planning to have babies often ask me what they should do. Here’s what I tell them: Demand to get tested before you get pregnant (or while you’re pregnant if you already are) to see if you’ve ever been exposed to CMV. It’s a simple blood test.
- Been exposed previously? While there are a number of different strands, this is likely one less thing you’re statistically likely to worry about.
- You have it right now or were recently infected? It may mean postponing getting pregnant. It might mean extensive ultrasounds and an amnio to see if the baby has it. If your unborn baby has been exposed ask where trials are being located to get access to antiviral treatment.
- Negative? Become OCD about hand washing. Don’t share utensils or sweet wet kisses with your toddler. Continue testing throughout the pregnancy.
Definitive treatment requires research and funding. Research and funding require exposure. Exposure can only come by pregnant women demanding their doctors test them. My hope is that we can turn that 9% into 99%. My hope is to have 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.