CMV Awareness Month Stories: Stronger Together
As told by Effie Williams:
Before my daughter’s diagnosis, I had never even heard of CMV. It wasn’t a word that had ever come up in antenatal classes or pregnancy leaflets. The first time I heard it spoken aloud, I was standing beside my four-day-old daughter in a hospital room, tears streaming down my face as doctors gently explained what her diagnosis might mean. My partner and I sobbed, our vision of new parenthood shattered in an instant. Those precious, early postpartum days we’d imagined – snuggling at home, slowly finding our rhythm were replaced by scans, specialist visits, and a world of unknowns.
cCMV became all-consuming. Baby groups were replaced with blood draws and endless appointments. Instead of peaceful nights together as a new family, we were in A&E waiting rooms. But amidst all that fear and grief, there was also beauty. We were cared for with such compassion by hospital staff. Each milestone our daughter reached brought us indescribable joy. And when we shared her diagnosis with others, we received an outpouring of unconditional love and support.
Our lives have changed forever—but not always for the worse.
The Early Days: A Crash Course in the Unknown
Our daughter’s journey began with a scan at 36+4 weeks, revealing changes in her brain: ventriculomegaly, microhaemorrhages, and calcifications. A long list of possible causes followed, each requiring more tests and agonising wait times. As I was due to be induced just days later, we decided to wait.
At birth, our little girl had tiny red dots on her skin. We thought they were freckles, just like her dad’s. But they were petechiae – a rash caused by low platelets. That, and the earlier brain scan, were clues that led to her diagnosis: congenital CMV (cCMV). In just days, our newborn underwent an MRI, ultrasounds, hearing and vision tests (she has no hearing in one ear), and countless blood draws. I remember asking if we could take her outside for a short walk, just to feel normal for a moment. We were told no, the risk of jostling her fragile brain was too great.
Those first days were terrifying. I was scared to step away from her, in case I missed a critical update or test result. Every scan felt like it held the weight of our entire future. I lived a thousand lives in my head, each imagining a different outcome.
How CMV Changed Our Lives
The first six months were a blur of hospital letters, medications, and long nights. It all started to feel normal. But one day, when someone shared a photo of their newborn grandchild at home, it hit me. This wasn’t typical. I had become so wrapped up in our new reality that I forgot what we were missing. We hadn’t been to a single baby group. Every story I had about our daughter took place in a hospital.
cCMV had become our world.
Family, Friends & Community: Our Lifelines
The diagnosis was a shock to everyone. Most had never heard of CMV. It frightened them and understandably so, given the lack of accessible information. But despite the fear, our loved ones showed up for us.
My mum has been my rock. She stayed with me in hospital, never leaving my side unless I was sleeping. She came to every appointment, waited with us in A&E, arrived first and left last. Becoming a mother taught me what I’d do for my daughter and reminded me what my own mum has done for me. I can never thank her enough.
Our friends, too, have been unwavering in their support. They didn’t need to understand cCMV to love our daughter fully. Their compassion shows me that no matter what her future holds, she will always be surrounded by kindness.
And then there’s the CMV community. The families we’ve connected with through a research study and peer support groups. Talking with other parents has made this journey less lonely. We share the same fears and hopes. We understand each other in ways others can’t.
“Stronger Together” – What It Means to Us
I’ve felt the strength of togetherness over and over. In the visitors who lit up our hospital room with joy and laughter. In the nurses who smiled and said, “We hope we never see you again!” at our last appointment. In my partner and I holding each other up, always knowing we’re not alone. And in the quiet moments too when someone listens without trying to fix it, or when I see my daughter smile and remember that joy still lives here.
Finding Strength in the Unknown
The hardest part of this journey is the not knowing. You mourn the life you thought you’d have and must learn to embrace a new one, shaped by uncertainty. “Wait and see” becomes the mantra and the burden. You get caught up chasing milestones, test results, answers. But then you look back and realise how far you’ve come.
Take photos of the smiles. Record the little breaths. Celebrate the head turns and tiny eye movements. These are the moments that matter.
Advice for Families Just Starting Their CMV Journey
- Keep a note on your phone for questions that come to mind in the middle of the night.
- The information can feel overwhelming. Take it at your own pace, but don’t avoid it. Knowledge is how we protect and advocate for our children.
- Look back often. Let the progress remind you of your strength.
- See hope in the unknown.
What I Wish People Knew About cCMV
I wish more people simply knew about cCMV. It’s so common and yet barely spoken about. The more awareness we raise, the more we can protect pregnant people and babies. And the more supported families like ours will feel.
Thank You, Tiny Lives
Lastly, I want to mention Tiny Lives, an incredible charity in the North East that supports families who have spent time in NICU. From counselling to classes, financial support to free parking—they have made a real difference in our lives.
It’s true that it takes a village! Together, we are stronger. For families navigating cCMV, you are not alone and you are stronger than you know.