Hope – Mel’s Story

Our daughter Hope’s journey with congenital cytomegalovirus  (cCMV) began before she was born. During pregnancy, we received the life-changing news that I had contracted CMV. We were offered two choices: a fetal MRI to assess possible brain damage or an amniocentesis to determine if the virus had infected the waters surrounding Hope. We chose the MRI, which revealed severe brain damage concentrated on the right side of her brain. Doctors remained cautiously optimistic, but they couldn’t provide a complete prognosis until Hope was born. 

When Hope arrived, she was very unwell from the effects of the CMV infection. Her heart, liver, and spleen were enlarged, and her health was so fragile that doctors warned us she might not survive the night. Against all odds, our beautiful Hope pulled through – and today, she’s thriving, courageous and looking forward to celebrating her 5th birthday. 

The Impact of CMV on Our Family 

The diagnosis of CMV had a massive impact on our family, throwing us into a period of deep uncertainty. Without knowing the full extent of Hope’s brain damage, we were left in limbo, unsure of what her future would hold. When we finally understood the level of care Hope would need, our family life changed dramatically.  

Our older daughter, who was just three at the time, was deeply affected. Watching her baby sister need constant medical attention triggered severe anxiety, and she eventually needed therapy to help her cope. Our emotions as parents were overwhelming and complex: fear for Hope’s future, anger that we had never even heard of CMV, and frustration that we hadn’t been warned about it during pregnancy. 

Challenges and Resilience 

While we’ve been fortunate to have a dedicated medical team supporting Hope, navigating the healthcare system hasn’t always been easy. We were shocked to find that many healthcare professionals, including some midwives, weren’t familiar with CMV or the risks it poses. This lack of awareness made an already difficult journey even more frightening. 

Hope has shown incredible resilience. She defied the odds when she was discharged from the NICU after doctors had doubts that she would ever come home. Later, we were told she would likely never walk or talk, but Hope has taken her first few unaided steps, and she learned to say “Mummy” at three years old – a moment I will cherish forever. Despite severe hearing loss, she continues to find ways to communicate, showing us every day that she is determined to keep reaching new milestones.