By Kristen Hutchinson Spytek, National CMV Foundation President

C-M-V. Three letters that keep me up at night and shake me to the core. Three letters that have managed to routinely shatter my expectations, body slam my optimism, expose my vulnerability, alter my perspective and even now, force me to recalibrate daily. My daughter, Evelyn Grace, was born on March 12, 2013 at 36 weeks with congenital cytomegalovirus. Or CMV.

Evelyn was my first pregnancy; I was thirty-one years old. My husband and I had been married for five years, and together since college, and we were ready. Emotionally, fiscally and socially ready.

The beginning of my pregnancy was largely uneventful. My husband and I talked with anticipation about the future, shared names we liked, vetoed ones we didn’t, and spent many evenings dreaming about who he or she would become. We agreed that most importantly, we wanted to raise a kind, compassionate human being that positively contributed to society. Easy right? I met with my OB at all required appointments, avoided all of the “things” like sushi, soft cheese, alcohol, etc., and at the mid-point anatomy scan, my husband and I were ready to learn whether we were expecting a boy or a girl. We wanted the tech to write it down in an envelope so we could open it together, privately, when we were ready.

After 45 minutes, the Maternal-Fetal Medicine specialist came into the room and started explaining something about an echogenic bowel. What? My heart rate accelerated and I held my breath. His lips were moving but I literally could not decipher the words. What did this mean? Should we be concerned? Is this a genetic issue? Will my baby be ok? The truth was, it could be something, or it could be nothing.

My pregnancy progressed and after several tests and consultations with specialists in pediatric cardiology, pediatric neurology, genetic counseling, and social work, we still did not have a realistic view of what we were dealing with. We were terrified. We remained hopeful for a healthy baby but the remainder of our pregnancy was clouded with fear of the unknown.

My daughter was breech and after five weeks of extensive monitoring of both me and the baby, my maternal fetal medicine physician made the call to move up my C-section due to low amniotic fluid. My husband and I practically skipped to the hospital that Tuesday afternoon. We couldn’t wait to hold our baby girl in our arms.

The surgery was fast and cold and clinical. I snuck a peak at Evelyn, all three beautiful pounds and 14 ounces, before they whisked her off to the NICU. But even then I did not have a real sense for the gravity of the situation. It was not until the neonatologist uttered the letters “CMV” did I truly realize the weight. Even though I understood very little about CMV, I knew that Evelyn was going to have special considerations. We were devastated for our daughter. The hopes and dreams we had shared for her, and the things we once believed to be big issues or milestones, now seemed trivial and small in comparison. We were in mourning for our “atypical” daughter and for what we wished we had known that may have potentially improved her prognosis. What should we have done differently? What questions should we have asked?

I experienced a primary (first-time) infection, likely during my first or second trimester. Evelyn (pictured right) was severely affected by CMV, receiving weekly early intervention services and private sessions in occupational, physical and speech therapies, in addition to countless specialist appointments. She couldn’t do much independently but she had a smile that lit up the room, a laugh that was beyond infectious, and a determination that continues to motivate every cell in my being. She gave my husband and I twenty-one months of unconditional, unequivocal love. Tragically, we lost Evelyn in December 2014 due to complications from a surgery, three weeks before our son, Jack, was born. It was an impossible time. I don’t remember much from the weeks that followed but at some point, my adrenaline kicked in while my heart exploded in my chest, and through my tears, I knew my daughter’s journey was going to help change the outcome for future babies. Her legacy will positively contribute to society.

There is an overwhelming amount of scary information bombarding pregnant women every single day. Information overload is real, yet simple dialogue between a patient and her caregiver (e.g. midwife, doula, OB, maternal fetal medicine specialist, primary care physician, etc.) is extremely important and sometimes, it’s the patient who has to lead the conversation. I only wish I had known more or had time to effectively plan before Evelyn arrived. I felt overwhelmed and ill-prepared.

Only 9% of women have heard about CMV according to a 2016 HealthStyles™ Survey, yet it’s more common than Down Syndrome, Fetal Alcohol Syndrome, Fifth Disease, Spina Bifida, Sudden Infant Death Syndrome (SIDS), and Toxoplasmosis. Absorb that for a minute. It is an often symptomless virus, or may present as a cold or flu, and only causes harm when a pregnant woman passes it through the placenta to the baby in utero (or in a person with a weakened immune system). More than half of the adult population has been infected with CMV before the age of 40, and once it’s in a person’s body, it stays there for life.

How do we successfully educate pregnant women about the risks associated with this virus, if hardly anyone has heard about it?

My best advice is to take control of your health! Have you ever been infected with CMV? If you’re thinking about becoming pregnant, ask your doctor for an IgG vs. IgM antibody test to understand if you’ve had CMV in the past, and whether or not you currently have an active infection. Already pregnant? No worries, ask for it anyway. It’s a simple blood test and is covered by most insurances. Professionals’ advice and recommendations will vary depending on the results and where you are in your pregnancy.

June is CMV Awareness Month. Our mission is to educate women of childbearing age about congenital CMV, with the goal of eliminating congenital CMV for the next generation. Whether you’re pregnant with your first or you’ve been down this road a few times, know this:

  • CMV is common. Congenital CMV is the most common viral infection that infants are born with in the United States — totaling 30,000+ babies each year, with 5,000+ suffering from permanent disabilities.
  • CMV is serious. Congenital CMV is the leading cause of non-genetic childhood hearing loss. Complications from congenital CMV results in up to 400 deaths yearly.
  • CMV is preventable. Pregnant women who have toddlers, or work with young children, are at the highest risk of acquiring CMV. The virus is typically spread through urine, blood, mucus, tears, semen or saliva, and there are simple behavior modifications that will help reduce this risk:
    • Do not share food, utensils, drinks or straws
    • Avoid contact with saliva when kissing a child
    • Do not put a child’s pacifier or toothbrush in your mouth
    • Wash your hands thoroughly, especially after changing a diaper

Please take a deep breath, practice the above prevention methods, and report any sign of illness to your midwife or doctor. If you are screened for CMV while pregnant, and the result is a positive active infection, your medical professional can do an amniocentesis to see if congenital CMV has spread through the placenta to the unborn baby. And if it has, interventions and therapies may be recommended.

CMV. Know Your Risk. Protect Your Family.

Kristen Hutchinson Spytek is the President of the National CMV Foundation. She has an M.A. in Global Marketing Communications & Advertising from Emerson College and a B.A. in Communication Studies from the University of Michigan. Kristen resides in Tampa, FL with her husband John, and sons Jack (2) and Thomas (4 mo).”

The National CMV Foundation is a non-profit organization dedicated to promoting awareness, providing access to resources and sharing prevention information to eliminate congenital CMV. Learn more at www.nationalcmv.org.