When We First Heard About cCMV
I first heard about CMV in 2024, the day my granddaughter was born. I’ve had three children of my own, known loads of children, spoken with hundreds of mums and yet, I’d never heard of CMV.
My granddaughter is now 7 months old and, thankfully, doing well for now.
The First Signs and Diagnosis Experience
I was incredibly lucky to be there at my granddaughter’s birth. My daughter had mentioned that her last scan showed some fluid on the baby’s brain, so I was already a little uneasy. The moment she was delivered, the medical team quickly took her to a corner of the room. Several doctors gathered around her, and I immediately felt that something wasn’t right.
Later that day, a neurologist spoke to us and mentioned congenital CMV as a possible cause for the rash she had. A few days later, the diagnosis was confirmed. I’ll never forget the moment four specialists walked into the hospital room and sat down. It was terrifying.
They hospital staff were wonderful – kind, informative, and patient, but the amount of information and the uncertainty about her future was overwhelming. It’s a lot to process.
How CMV Has Impacted Everyday Life
The first week was incredibly tough. Watching a tiny newborn go through so many tests: blood work, infusions, hearing tests, an MRI was heartbreaking.
Telling others was difficult too. There’s the joy of announcing a new grandchild, but it felt like CMV became a huge part of her identity straight away. It’s hard to know how much to share when there’s so much unknown.
We’re very fortunate the hospital is within walking distance to our home, which helps because there have been many appointments. Still, you spend so much time in waiting rooms, in A&E, in follow-ups. It takes an emotional toll, and there’s a financial side too – parking, food, the extra bits that add up. I often think of families who don’t live near a hospital and how much harder that would be.
Our Family’s Role
All of our family adore Isla, absolutely and unconditionally.
No matter what the future holds, no matter what support she may need, we will be there. That’s non-negotiable. She is deeply loved.
The Role of Friends and Community
Our friends have been such a blessing for the whole family. They brought food to us when we were in hospital, offered comfort, and accepted our granddaughter with open hearts, just as we have.
The hospital community was fantastic too. They gave us time to take everything in, really listened to our hopes and fears, and gently explained the reality, even when it wasn’t what we wanted to hear. That support meant everything.
Stronger Together
There have been so many moments when we truly felt the power of community. Whenever we’ve asked for help, whether emotional support, a practical need, or just someone to talk to – it’s been given. That’s when you realise how strong your support system really is.
Challenges Along the Way
The hardest part early on was the waiting – waiting for test results, for answers, for plans to be made. The discharge process felt long, and there’s still a lot of waiting in follow-up appointments.
But perhaps the most difficult thing is the uncertainty about her development. That unknown is always there. When I feel overwhelmed, I find comfort in looking back at photos. I remind myself how poorly she was at birth and now, at 7 months, she’s brilliant. She’s growing, she’s loved, and she’s here.
Advice for Families Starting Their CMV Journey
- Get informed. Learn what you can – it helps you feel a little more in control.
- Be kind to yourself. There is nobody to blame.
- Ask for help. Reach out to professionals, friends, family, whoever you trust.
- Write down questions. Put them in your phone as they come up. It helps during appointments.
What I Wish People Knew About CMV
CMV is far more common and more serious than most people realise. It’s not just a small virus. It can have very real, lasting impacts on babies and their families.
A Message to Other Families
As a grandparent, I know how hard this can be. You’re trying to support your own child while also worrying deeply about your grandchild.
There’s a lot to take in and process, especially early on. My advice is to take your time. There’s no rush to have all the answers. Ask for help when you need it, and know that the more supported you are, the better you’ll be able to support your family. You’re not alone in this. Write questions down as they come to you, don’t be afraid to speak up, and most importantly, be kind to yourself. This isn’t anyone’s fault. What matters most is being there for each other, one day at a time.