Our daughter, Charlie, changed everything.
At 34 weeks pregnant, a routine growth scan took an unexpected turn. Within hours we were told there were serious concerns about our baby's brain and overall health.
In the weeks that followed, after further testing and specialist consultations, we were introduced to something we had never heard of before - congenital cytomegalovirus (cCMV).
Like many expectant parents, we had no prior awareness of CMV.
We learned that CMV is a common virus, usually harmless in healthy adults, but when contracted during pregnancy, it can pass to the unborn baby. In some cases, including Charlie's, the impact can be severe affecting the brain, development and overall survival in the womb or through infancy.
Charlie had been affected in the most devastating way- her body was failing.
Following her birth, re-testing of my NIPT bloods confirmed she had acquired congenital CMV after I contracted a primary infection early in pregnancy at 10 weeks.
Why This Matters
Through our experience, we came to understand that what happened to Charlie is not rare but awareness of it is.
Congenital CMV is one of the leading infectious causes of disability in newborns worldwide, yet:
Awareness among expectant parents remains extremely low
Many are never informed about CMV during pregnancy
Simple hygiene measures that can reduce risk are not widely communicated
No parent should hear about congenital CMV for the first time in a moment of crisis.
Our Mission
The Hope Initiative for CMV was created in Charlie's honour.
Our mission is simple but urgent- to increase awareness of congenital CMV.
We aim to:
Encourage conversations between parents and their doctors, obstetricians, and midwives
Promote simple, preventative hygiene measures during pregnancy
Advocate for improved education, screening, and consistency in antenatal care
Support research into prevention, treatment, and outcomes
Moving Forward
We can't change what happened to Charlie - but we can change what happens next.
Awareness leads to prevention. Knowledge empowers parents. And small actions can protect babies.
Charlie is our why.
And this is where change begins.