Lisburn mum left heartbroken when common virus causes hearing loss in newborn baby

Congenital cytomegalovirus (cCMV) is the most common infectious cause of birth defects in the UK, yet it remains largely unknown.

Every year, around 900 children are severely affected by cCMV, facing lifelong challenges such as hearing loss, developmental delays, and vision impairment.

Despite being more prevalent than Down’s syndrome or spina bifida, public and professional awareness is alarmingly low.

In an attempt to raise awareness of the impact of the virus, Ashton Mortimer, whose partner recently ran the Belfast marathon to raise funds for the charity CMV Action, is sharing her story.

“I wasn’t aware of CMV at all,” admitted Ashton. “Most people I’ve spoken to, including midwives, don’t know about it and I was having to tell them what it was.

"It is similar to the flu. Most people have the virus but it’s only dangerous if you catch it for the first time when you’re pregnant.

"It almost comes across like a cold and you wouldn’t really know you had CMV.

"I never knew I had it but I obviously caught it when I was pregnant. It’s very common in young children and usually most people who have it have caught it from kids.”

It was only when son Reuben was born that Ashton discovered she had contracted CMV during pregnancy and it had caused hearing loss in her baby.

"Reuben was a completely normal child,” Ashton explained, “but he failed his newborn hearing test three times and we were referred to the hospital.

"At that point they tested Rueben for CMV. They thought it was highly unlikely but it came back positive.”

Ashton was devastated when she found out that Rueben had tested positive for CMV and that it had caused his hearing loss.

During what should be a happy time for the new mum, she spiralled into a very dark place and spent hours googling the condition and the impact it can have on children’s lives.

"It was heartbreaking,” she continued, “At five weeks old he had to go on really strong antiviral medication and he had to go to the hospital for blood tests. It was terrible.

"I went through a bout of darkness. It’s the fear of the unknown.

"If he was every sick after I gave him medication I would be in a downward spiral.

"I was very depressed and anxious as well. I would sit all night googling CMV.

"My anxiety was through the roof.

"A lot of things can be associated with CMV, including hearing loss, sight loss, cerebral palsy, some children even pass away from it.”

Reuben went through more hearing checks, sight tests, and MRIs. He was monitored for four years to assess the damage caused.

He was under the care of an infectious disease doctor for four years to monitor the damage.

"If there’s no more damage after four years then the virus has done its damage,” Ashton explained.

"Rueben is coming seven and he has single sided hearing loss and will need a cochlear implant to fix that.

"He is also being assessed for ADHD which could be related to CMV as well but we are on a very long waiting list for that.”

Despite the struggles he faces on a day to day basis with hearing loss, Rueben is a very happy child, with mum Ashton calling him ‘Rueben the hurricane’.

"He never stops,” said Ashton. “He’s a happy boy but he would struggle in a school setting or if we are in busy environments and he can’t hear us very well. He can’t detect where noise is coming from.

"Apart from that he is thriving.”

Ashton and Rory have not only been raising awareness, but they have also been fundraising to help the charity CMV Action.

"When Reuben was a baby I ran the Belfast marathon for the charity CMV Action. Not a lot of people raise money for them or know about it.

"Reuben’s dad Rory ran the Belfast marathon for the charity again this year.

"Any awareness is good awareness. The more people that know about CMV the better.”

CMV Action is the UK’s only charity dedicated to addressing this silent crisis.

Through support services, education, research, and advocacy, the charity works to protect babies, empower families, and drive change.

Most healthy adults and children who become infected will have no signs or symptoms and no long term effects from CMV.

However, CMV can pose serious problems to unborn babies if a woman catches it during pregnancy . In fact congenital CMV (when the infection is passed from mother to baby across the placenta) is one of the most common non-genetic cause of inner ear hearing loss and a major cause of childhood disability.

Despite this, there is very little awareness of CMV and the facts are often misunderstood. A diagnosis of CMV can be stressful and confusing.

CMV can be transmitted to the developing baby across the placenta, causing congenital CMV.

According to CMV Action: “Very often pregnant women catch CMV from the saliva of a toddler, therefore care should be taken not to eat leftover food, drink from the same cup, share utensils or kiss on the lips.

"It can also be caught through contact with urine, so hands should be thoroughly washed after changing a nappy.”

Lucy Liang, Chair of Trustees, CMV Action, commented: “We hear from families every week who had never even heard of cCMV until their child was diagnosed. Our goal is to change that - so no parent is left in the dark.”