By Frances Jones
For so many people, CMV is just three letters. It could stand for anything.
Two years ago, it meant nothing at all to me.
That’s the problem.
I’m fundraising for CMV Action UK because too many people, especially expectant parents, have never heard of cytomegalovirus (CMV), despite it being incredibly common and capable of causing life-changing harm to unborn babies. CMV Action exists to raise awareness of simple steps that can reduce the risk of infection during pregnancy, and to support families and individuals affected by this virus. Their work matters more than I ever imagined it could.
So this is my story…
An unexpected pregnancy, then the unexpected diagnosis
In late August 2023, my husband and I were surprised—and excited—to discover we were expecting our fourth baby. She wasn’t planned, but she was very much wanted.
As an older mum, there were a few additional things to keep an eye on, but my pregnancy progressed beautifully. The 12-week scan brought good news. The 20-week scan did too. Everything seemed fine.
Then, in January 2024, I became seriously unwell.
I had a wide range of symptoms: I struggled to eat, I was in significant pain, my spleen was enlarged, and there was pressure on my breathing. I spent eight or nine days in hospital while doctors tried to work out what was wrong. Eventually, frightened, confused, and without answers, I went home, not knowing if I was safe, and not knowing if my baby was safe.
Shortly after, I received a phone call.
One of the blood tests taken during my hospital stay showed that I had a CMV infection. I had no idea what that meant, but I immediately felt uneasy when the nurse asked me to come in for an urgent consultation with the antenatal team.
That first appointment was incredibly hard. The consultant was wonderful, clear, kind, and honest, but the information was devastating. They explained that the risks of CMV in pregnancy are unpredictable, but that there was a risk to the baby. They were able to test blood taken before my pregnancy and confirm that this was my first-ever CMV infection.
That distinction matters.
When a woman catches CMV for the first time during pregnancy, the virus can cross the placenta and affect the baby. The potential outcomes range widely. On that day, the worst-case scenario discussed with us was that we might be advised to consider a medically indicated termination.
From that moment on, we entered a long, painful waiting game.
And in many ways, we are still waiting.
Living With Uncertainty
My pregnancy continued under close monitoring. There were multiple detailed scans and antenatal MRIs. Each appointment came with hope, and fear.
My waters broke at 34 weeks, and our daughter, Astrid, was born at 35 weeks. From the very first moment, she was, and remains, amazing.
Astrid tested positive for CMV at birth. This is known as congenital CMV (cCMV). It carries a wide range of possible challenges, some visible at birth and others that may not emerge until later childhood.
We spent a long time in transitional care before finally coming home just after Easter. Since then, there have been endless tests, appointments, and monitoring, alongside truly fantastic support from medical professionals. This follow-up will continue until Astrid is around seven years old.
We have been enormously lucky. The vast majority of Astrid’s results have been normal. The only exception so far is some slight abnormalities in parts of her hearing tests. With every normal result, I tell myself that if issues do arise in the future, perhaps they will be less severe.
But I know how fortunate we are.
The Reality for Many Families
Since becoming involved with CMV Action UK and connecting with other parents through their support groups, I’ve learned just how different many families’ experiences are.
Hearing loss is one of the most common effects of congenital CMV and it is, in fact, the leading cause of childhood deafness. Vision can also be affected. Some children develop cerebral palsy or other conditions linked to brain lesions and damage. The likelihood of autism and neurodevelopmental differences is significantly higher in children with cCMV.
The list of potential impacts is long, and as a parent, it can be terrifying.
The Shocking Part
Here’s what still astonishes me.
CMV is enormously prevalent. A huge proportion of adults have been exposed to the virus at some point in their lives and have developed natural immunity. The greatest risk exists for pregnant women who catch CMV for the first time—and the risk is far greater for the unborn baby than for the mother.
And yet…
CMV is barely mentioned.
It doesn’t appear in most information packs given to pregnant women. It isn’t widely discussed in antenatal education. Expectant mothers are surrounded by guidance on what to eat, what to avoid, and how to support healthy development, but CMV is almost entirely absent from the conversation.
Why I’m Fundraising
So I decided to do my small part.
I wish I could say I’m running a marathon or taking on some epic physical challenge, but as a mum of four with a full-time job in education, time is not on my side.
So I thought about what would be a challenge for me.
My hair is a huge part of my identity. It’s never been shorter than shoulder-length since I was about ten or eleven years old, and right now it reaches my waist. If I’m honest, as someone who is a bit chubbier than average, I worry about how I might look with short hair.
So that’s my pledge.
I’m cutting my hair and donating it to The Little Princess Trust.
Before that happens, I hope this small act of bravery might encourage others to support a cause that is incredibly close to my heart.
If you’re able to donate, anything at all, it would mean so much.
If you can’t donate right now, please consider sharing information about CMV with any expectant parents you know. Just sharing this story can make a difference.
Thank you so much for taking the time to read my story.
I’ll be cutting my hair on Friday the 13th of February, and I’m crossing my fingers that, along the way, I’ll have helped raise awareness and funds for families who need them.