Portland mum's bid to raise awareness of condition after daughter's diagnosis

Melanie Hiscutt, of Portland, said she had never heard of Cytomegalovirus (CMV)when she first found out her daughter’s diagnosis in 2019.

Her daughter, Hope, who is now 18 months old, was only screened for the virus after doctors noticed that her head was measuring smaller at 20 weeks.

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Most people have had CMV at some point in their life. Most of those who are infected rarely know they have it because it very rarely causes problems in healthy people – however if you are pregnant or if your immune system is weakened, CMV is a cause for concern.

On getting the diagnosis, Melanie said: "I was heartbroken, it was a virus that I had contracted at the start of my pregnancy." Melanie hopes that by telling her story she can help raise awareness for CMV and wants more people to sign a petition which would require all newborn babies to be screened routinely for the virus which can be potentially fatal.

"You’re not told about it at all and it is more common than down syndrome. Most children who are affected by it are born with it, but they don’t realise that anything is wrong at first.

"But it is so important if they do have it to act quickly. You have got 28 days after birth to start the antiviral treatment and if the treatment is not started in that time and the child tests positive then it is less likely to work.

"Hope has had the anti-viral treatment because we knew when she was born she would have CMV. It helps treat the virus – if she wasn’t given it she may not have made it."

Hope now as a toddler. Picture: Melanie Hiscutt

The main way pregnant women catch CMV is from small children, so women who work with children, or who have a family already, are advised to be especially careful during pregnancy.

CMV can cause devastating conditions for an unborn baby. It is the leading cause of non genetic deafness in children and can cause a number of serious complications during a child's development, and can even be fatal.

Melanie was planning to go back to work, and was previously a sales assistant, but now because Hope has a number of major health problems as a result of CMV, Melanie has registered to become a full time carer for her.

She said: "It is really hard, I feel like her nurse."

When giving birth Melanie told the midwives that Hope would be born with CMV and was shocked to find out even they didn't seem to be aware of the condition.

She added: "We actually came up with her name whilst in the hospital. It was while we were waiting for her test results. I just looked at my partner and said ‘what about Hope?’ - we think she has the perfect name, we call her 'our little warrior'.

"She was born on Christmas Day and she really does just feel like a Christmas miracle!

"We were told the night of her birth she wouldn't make it, as it looked like she was going into organ failure.

"But Hope made it home, surprising every single doctor that treated her in her first few days of life."

Chairman of CMV Action, Sarah Dewer, said: "The majority of babies born with the CMV virus do not have symptoms at birth but some of them will develop symptoms later including deafness. Babies born with the CMV virus can be given antiviral treatment in appropriate cases but this has to be given in the first 28 days.

"The aim of the campaign is to make sure that no baby born with the virus misses the opportunity for monitoring and treatment."

To find out more information about CMV and the petition visit www.cmvaction.org.uk