CMV IS SCARY, SO WHY HAD I NEVER HEARD OF IT?
Helen Husbands's daughter Isabelle was born with Cytomegalovirus, a common virus which can be catastrophic when a pregnant woman passes it to her unborn child
One mother wonders why she wasn't told about the causes of Cytomegalovirus (CMV)
To the far left of this photo is our fun-loving, determined, cheeky, sweet daughter, Isabelle, who is six. We adore her smile and hearty laugh. She loves the Red Arrows, Tim Peake, dressing-up and pizza.
Isabelle was born with Cytomegalovirus (CMV) and June is International CMV Awareness Month. I hope sharing a little of our story will help in some small way.
Isabelle was two weeks overdue and delivered by ventouse. At 7lb 9oz, she was considered a healthy weight. During the pregnancy, I'd had extra scans as her head was quite small and her tummy big, but all measurements were considered normal.
Little did we know, Isabelle had CMV. It's a common virus harmless to most people but can be catastrophic when a pregnant woman passes it to her unborn child. It is spread through bodily fluids, particularly from the saliva and urine of small children.
Isabelle is deaf and has Worster-Drought Syndrome, a type of cerebral palsy affecting the muscles in the mouth and throat. Her speech, eating and behaviour are affected. She vocalises and uses sign supported English to communicate, and has a wicked sense of humour.
We brought lsabelle home at a day old, knowing she had failed the initial newborn hearing screening. We were falsely reassured it was probably muck in her ears from birth. By three weeks old, we knew she was severely deaf in both ears. We were told it was likely genetic, but tests showed it was CMV, and an MRI revealed calcifications on her brain.
'It causes more birth defects and deaths than Down’s syndrome, Toxoplasmosis, Spina Bifida or Rubella. So why had I never heard of it?'
Isabelle started a gruelling six weeks of treatment at four weeks old. Intravenous drugs were pumped into a line in her heart twice a day, 12 hours apart. This reduced her viral load with the aim of limiting further deterioration in hearing, though it weakened her immune system too.
CMV is one of the most common causes of birth defects in the UK. Around one in 1000 children per year will be born with permanent disabilities as a result of CMV - that's two to three babies every day.
It causes more birth defects and deaths than Down’s syndrome, Toxoplasmosis, Spina Bifida or Rubella. So why had I never heard of it? Many of the health professionals I spoke with hadn't either, which I found shocking.
Research into a vaccine is underway but, in the meantime, it's important to focus on reducing the risk of spreading CMV by taking good hygiene precautions. There is a graphic with more information below.
Just last year, when a family member asked to put up a CMV poster in an antenatal clinic, she was refused, on the grounds that, 'we don't want to scare mums'.
Well, CMV IS SCARY. It can cause miscarriage, stillbirth, blindness, deafness, cerebral palsy, physical and learning disabilities and more. It seems absurd that I knew which cheeses to avoid (listeriosis) and to not touch cat poo with a bargepole (toxoplasmosis) and yet CMV is 30 times as common and I didn't have a clue what it was.
Awareness needs to improve, and with the help of organisations like CMV Action, and people sharing their stories, hopefully this will happen. Please feel free to share this story.
:: For more information see cmvaction.org.uk and the infographics below.