When Lisa Midgley’s son, Christian, was diagnosed with Congenital Cytomegalovirus – a birth disorder affecting around one in 150 newborn babies – shortly after he was born, she found solace in a charity supporting families affected by the condition.
Through the charity, CMV Action, Lisa is sharing her family’s experience to help others in similiar situations. She is determined to raise the profile of the disorder which, despite the risk it potentially poses to unborn babies, is not widely known about.
So when family friend, Bradford’s Kimberley Walsh, chose to support CMV Action as her charity during her recent appearance on ITV quiz show Celebrity Family Fortunes, Lisa was delighted.
The Girls Aloud star appeared on the show last week with her younger sister Amy, boyfriend Justin Scott, brother-in-law Joe and brother Adam and, although they didn’t make it through to the big money round, losing out to dancer Wayne Sleep and his family, they raised £1,000 for CMV Action and helped to boost the charity’s appeal.
“Kimberley had always said she wanted to do something for Christian, particularly for the charity that helps us and their families. This came up for her and she thought it would be a great opportunity,” says Lisa, from Bingley.
“She asked what we thought and I said it would be fantastic. It’s awareness and it’s spreading the word.
“As a result, Twitter went crazy. All Kimberley’s followers got to know about it. Suddenly you have got lots of people knowing about CMV and every day it is going around the country and the world with social media. Awareness is what we want to see,” adds Lisa, who got to know Kimberley through her friendship with the Girls Aloud singer’s older sister, Sally.
“She is very busy and there are probably lots of charities that would love her to do something, so I was overwhelmed that she was doing it for Christian. It was a lovely thought.”
Lisa, a mother-of-three, wasn’t aware that she had the CMV virus, which can present itself as a cold, while carrying her son.
“It is a common virus but when you get it when you’re pregnant it can have devastating effects on your unborn baby,” she explains.
Her introduction to CMV came when tests were carried out on Christian after he was born. Lisa says he was jaundiced, but when light therapy didn’t help, investigations were undertaken to check whether there was a problem with his liver.
Hearing problems were also detected which Lisa says all pointed to potential symptoms of CMV. Christian was transferred from Airedale General Hospital, where he was born, to the liver unit, then at St James’s Hospital in Leeds, for further tests and scans.
“It was so fast, when I look back it feels like a dream,” recalls Lisa.
She says one of the worst moments was when the consultant told them Christian was a very poorly baby and his liver wasn’t working.
“That is when we realised the seriousness at that time and there was only so much they could do for a liver that wasn’t working properly,” she says.
Gradually, Christian’s liver improved but he is profoundly deaf, although his condition is eased by a cochlear implant – a small electronic device that can provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing – he had fitted when he was 18 months old. Now aged seven, Christian attends a school for deaf children in Boston Spa. He is also autistic, but he clearly brings great joy to his family, mum Lisa, dad Andrew and sisters Eve, nine, and five-year-old Fearne.
When she had her youngest child, Lisa was forewarned about CMV but she appreciates that many women aren’t warned about it and may not be aware of the potential risks it can pose, fuelling her determination to raise its profile and expand people’s knowledge.
“I wasn’t aware of anything initially. When I was pregnant all the information I was given through the midwife or doctor was ‘don’t drink, don’t eat shellfish or too many tins of tuna’ and I did exactly what was asked of me,” says Lisa.
She believes more women should be informed about CMV and, ultimately, she hopes that a vaccination will be given on a routine basis as other vaccinations given to protect youngsters against diseases such Rubella.
“Seeing as though it is quite common compared to other things they do talk to you about, I think it should be included with general doctor or midwifery conversations,” says Lisa.
For more information, call CMV Action on 0845 4679590 or visit cmvaction.org.uk.