“If I had known”
As told by Courtney Stogden
My pregnancy had been smooth and uncomplicated until 30 weeks, when I attended a routine growth scan. During that appointment, doctors noticed that my daughter Harper had enlarged ventricles in her brain. From that moment, everything changed.
I was sent for blood tests and referred to fetal medicine, as well as for a fetal MRI scan. The blood results confirmed that I had contracted cytomegalovirus (CMV) during pregnancy. At first, I was given very little information about what this meant for my baby or for our future.
Later, fetal medicine explained that antiviral treatment would not be offered, as they believed the damage to Harper’s development had already occurred by the time the infection was identified. Hearing that there was nothing that could be done was devastating.
Harper was born prematurely at 34 weeks so doctors could assess her health more closely. What had started as a normal, happy pregnancy suddenly became filled with fear, uncertainty and unanswered questions.
Before this experience, I knew nothing about CMV. I had never heard of it and was never given any information during pregnancy. When concerns began to arise, I asked my midwives and health visitor for advice and support, but neither could help. I was left to research everything myself.
The final week of my pregnancy was filled with fear, tears, constant research and very little sleep. I wish I had been told about CMV earlier and supported properly during one of the most frightening times of my life.
Today, congenital CMV has changed every part of our family’s daily life. Harper is two years old and is registered blind, with profound hearing loss. She cannot sit independently and she cannot walk. She is a happy and content little girl, but that does not take away the grief and the emotions around everything that cCMV has taken from her.
It has affected her sister too. She sees that Harper cannot do what other children her age can do and wonders why. Watching our children grow up so differently, when this could have been prevented, is something we carry with us every day.
Appointments now take over our lives. Our weeks are filled with hospitals, therapies and assessments. Nothing is spontaneous anymore. Even the simplest outing has to be planned around access, equipment and Harper’s safety.
Even everyday moments feel different. On the school run, we see toddlers walking their siblings into school — something Harper will never be able to do. These small, ordinary moments are constant reminders of how profoundly cCMV has affected our family.
Since Harper’s diagnosis, the support that has made the biggest difference to us has been the CMV Action WhatsApp group. Connecting with other families who truly understand what living with congenital CMV is like has been incredibly important. The openness, honesty and kindness within the group have been amazing.
Being able to ask questions, share worries, celebrate small wins and know that we are not alone has made a huge difference to how we cope day to day. In a journey that can feel very isolating, that sense of community has been invaluable.
If I could speak directly to expectant parents and healthcare professionals, there is one message I would want them to hear.
During pregnancy, we are told again and again what not to do.
Don’t change cat litter.
Don’t eat cured meats or soft cheese.
Don’t eat pâté, raw eggs or undercooked meat.
Don’t drink alcohol.
Don’t smoke.
Limit caffeine.
Avoid certain fish.
Avoid hot baths and hot tubs.
These warnings are everywhere. In leaflets, apps, midwife appointments and antenatal classes. And yet, nobody told me the most important one.
Nobody told me not to share food or cutlery with a toddler.
Nobody told me to avoid kissing young children on the mouth.
Nobody told me to wash my hands after wiping a nose or changing a nappy.
Nobody told me about cytomegalovirus.
A virus that is more common than many of the risks we are routinely warned about.
A virus that can change a child’s life forever.
If I had known, I would have done things differently. And my daughter might not be living the life she is now forced to live.
Finally, I want to stress how vital awareness and prevention are.
Simple hygiene advice and basic information about CMV could prevent families from living the life we now live.
There is also a clear need for better professional awareness and earlier screening, so families are properly supported and given opportunities for early intervention. No parent should have to research something this serious alone.
Harper is an incredibly happy little girl, and we are so proud of her. But she is living with challenges that could potentially have been prevented and that is why CMV awareness matters.