TWO years after being given the devastating news her daughter had suffered from a common virus caught in the womb, Kayleigh Menzies lost her forever.
Little Justice died after battling through hearing loss, blindness and trouble swallowing after doctors didn’t catch she had picked up cytomegalovirus (CMV), and didn’t treat her.
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A common, usually harmless virus, CMV is similar to the herpes/cold sore illness and stays in the body for life once it has been contracted.
Usually, people with CMV don’t ever know they have it.
However, in some cases, mums can pass down the virus to their unborn babies in the womb, if the virus is “active” – known as congenital CMV.
If a baby is known to be born with CMV, although it cannot be cured, they are given antivirals to weaken the virus – then monitored until they are five years old.
It’s the most common cause of childhood disability and hearing loss, and devastates over 1,000 families each year in the UK – yet according to latest polls, only 14 percent of British women have heard of CMV, despite it being more common than Down’s syndrome.
The charity CMV Action says simple hygiene measures could help prevent this happening to two or three families every single day, and wants newborn screening brought in as standard practice.
Below we tell the stories of three mums who wished they had known more about the disabling and potentially fatal virus.
Kayleigh Menzies
Kayleigh Menzies’ daughter Justice passed away on March 27 after two years living with the devastating effects of CMV.
Also mum to Angel, 15, and Brooklyn, 13, Kayleigh says she had never heard of CMV by the time she was told at the 31-week scan that her daughter had severe brain damage as a result of the virus.
Kayleigh, 31, from Doncaster, said: “I felt simply terrible from the very start of my pregnancy, and knew something wasn’t right, but all the early scans didn’t pick up anything. I even paid for a private 20-week scan, but again, the doctors said everything seemed to fine.
“At the 31-week scan, the sonographer picked up some potential fluid on Justice’s brain, then I was referred to a specialist in foetal medicine who broke the news that our daughter had severe brain damage – if she did survive, she’d be in a vegetative state, with no quality of life, he said.
“In a complete state of shock, I just wanted to know how this happened – then the consultant said it could be the CMV virus, which was confirmed a few hours later, saying she had the highest viral load they’d ever seen.
“I’d never heard of CMV, how to prevent it or how dangerous it was, yet here I was being told my unborn baby’s life was ruined.
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“I then learned that if it had been picked up earlier I could’ve had antiviral medication – but nobody checked for it.
“Offered a termination, my partner Luke and I said we had to give her a chance, we could still love her.
“Justice was born by a planned C-section at 37 weeks, and miraculously she seemed at first to be quite normal. She was just 4lbs 14oz and a bit small, but she breathed on her own, and even took a bottle.
“But the next day scans confirmed her brain damage, and she started to go downhill. The doctors simply said to ‘just love her’.
“Home three days later, with support, every single part of Justice’s body had been ripped to pieces – she had profound hearing loss, her optic nerves were completely gone, she had an unsafe swallow…the list was endless.
“The last 6 months of her life were just about keeping Justice comfortable until she finally passed.
“The effects on everyone around her as a result of CMV are still ongoing – we’ve been diagnosed with PTSD.
“The shocking thing is this all could have been prevented if I’d been checked for the virus in time.
“I set up a campaign group called Justice’s Legacy where I reach out to help others families affected by CMV – this has to change, in Justice’s memory.”
Casey Ashton
One of the thousands of mums who know only too well the horrific consequences of this illness is 30-year-old single mum Casey Ashton from Leeds.
Casey’s daughter Reenie is now two and a half years old, but due to contracting CMV as a new-born, is completely non-verbal, cannot stand or walk, and doctors have warned she will likely suffer from epilepsy, autism and cerebral palsy in coming years.
Factory supervisor Casey, said: “I was overjoyed to find out I was pregnant in the summer of 2019, but my 20-week scan at Leeds St James Hospital in the September indicated there was no amniotic fluid, which suggested my waters had broken – which they evidently hadn’t.
“I was told my baby may be missing organs and was told to come back four days later for scans at Leeds General Infirmary to see if I could continue with the pregnancy.
“Needless to say I didn’t get much sleep in the next few days, but mercifully those scans showed the baby did have its organs, however the heart was enlarged with fluid around and the bowel scans suggested the chance of her Downs syndrome.
“At 37 weeks I was induced as my baby was at high risk of still birth because she was small, and on 15th March I gave birth to a healthy 4lb 7oz baby girl.
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“We thought everything was fine until Reenie’s developmental delays became really apparent, after about 12 months – all the other babies I knew about the same age could lift up their heads and seemed to be growing stronger and more alert, unlike Reenie.
“There MRI scans on her spine and brain showed severe damage to her brain consistent with CMV – it was the first time I’d heard of CMV, and was told it’s a virus everyone picks up at some point, but if you catch it when you’re pregnant, it can damage the baby.
“I then remembered a seemingly benign cough I’d had at 20 weeks, and was told something that small could cause it.
“But by then Reenie was 18 months old, and I was told it was too late for treatment. If this had been done at birth, things could be a lot different.
“She could have been offered anti-viral treatment to lessen the effects of the infection, treatment which must be given within the first four weeks of the baby’s life.
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“She has severe developmental delay, is nonverbal and cannot stand or walk – she’s 3 years old in March, and the difference between her and other babies her age couldn’t be more obvious.
“Although I would never change anything about Reenie, it’s been the most difficult thing to have to go through.
“I just want everyone to know about this infection, and understand how severe it is! Children can die from it, it’s more common than Down’s, but still there’s no testing!”
Dr Chrissie Jones, associate professor in paediatric infectious diseases and immunology at the University of Southampton, said that early intervention is key.
“Diagnosis within the first 21 days is critical,” she said. “Antiviral treatment has to be started within the first 28 days of baby’s life in order to be effective.”
Helen Harrison
Another mum who wishes she’d known more is Helen Harrison, from St Albans in Hertfordshire.
Helen’s fourth pregnancy was seemingly uneventful. During her first trimester she felt really tired and shivery and had achy joints for a few weeks.
She said: “I mentioned it to my midwife and she just put it down to a bug or being rundown from being pregnant and having three young children.”
Her scans didn’t pick up any problems with the baby. So it was a shock when her son, Alfie, was born and something was clearly wrong.
He had a purple pinprick rash and doctors initially thought he had sepsis.
After they discovered he had a small head, enlarged liver and spleen and abnormalities in the brain, tests revealed he had CMV.
Helen was told that the apparently innocuous “bug” she had at the start of her pregnancy had very likely been the cause of her son’s disabilities.
“We were taken into a room and told that Alfie will never walk or talk again and probably never see,” she said.
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Helen said despite Alfie being her fourth pregnancy, she had never heard of CMV before.
“Luckily Alfie received treatment early on. But I wish I’d been made aware of the risks so I could have taken the simple precautions.
“Women should be warned about this by their midwives when they are told what foods not to eat. We are warned about the risk of listeria yet the risks from CMV are greater.
“I would have not kissed my children on the lips and been more careful with hand hygiene.”
Alfie is now two-and-a-half years old. He has cerebral palsy in all his limbs, suffers from seizures and muscle spasms, is visually impaired and has difficulty swallowing.
“We are grateful that his hearing is good,” said Helen, 36, who is married to Dan, 39.
“He can only see light changes but nothing else. He can’t walk or talk and he has severe global developmental delay.
“Despite this, he is a very happy little boy who adores his sisters.”
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