YOU wouldn’t think twice about kissing your kids, sharing food with them or perhaps putting their dummy in your mouth to clean it. But a mum is urging parents to be aware that this is in fact, NHS advice.
Helen Harrison, 40, was excited to have her fourth child and first son, Alfie. But he was born disabled after she unknowingly caught a common virus that harms unborn babies, and yet, most parents or midwives have even heard of it.
The mum-of-four passed on the common virus to baby Alfie in the womb[/caption]
Severely disabled Alfie, now six, has cerebral palsy, epilepsy, limited vision and a learning disability due to the virus[/caption]
Now six years old, severely disabled Alfie has cerebral palsy, epilepsy, limited vision and a learning disability. He cannot walk, stand or feed himself, and is still in nappies.
Helen, of Wheathampstead, Hertfordshire, says: “He can’t do anything for himself, and probably never will.”
Helen feels she was “let down” by the NHS, having never been told about cytomegalovirus (CMV) while pregnant, passing it on to Alfie in the womb.
Helen, married to Dan, 42, a construction firm boss, tells Sun Health: “I’ve never walked into a doctor’s surgery and seen a poster about CMV saying, don’t share your children‘s food or cutlery, or kiss them on the mouth.
“It’s the summer months, you wouldn’t hesitate to let your child have a lick of your ice cream.
“It makes me really cross that you’re not warned about CMV. I just feel a bit let down.”
It’s thought health chiefs don’t want to unnecessarily scare parents about a virus that is so common, so easily spread but for most, has little consequences.
“Most babies with congenital CMV do not have any symptoms,” the NHS website says. But it adds it can ‘sometimes’ cause problems – ranging from a rash to seizures and problems with the liver.
For some, like Alfie, the impact is life-limiting. Up to 4,000 babies are born with CMV every year, according to Dr Helen Payne, a leading CMV researcher at London’s Imperial College and St Mary’s Hospital.
Of those, an estimated 800 have long-term consequences, such as deafness or learning disabilities, while 200 suffer as severely as Alfie.
Dr Payne says: “It’s upsetting that a condition that is so widespread and profoundly affects some infants is barely known by the public, especially when there are actions that can be done to prevent infection.”
CMV is a common bug that usually has no symptoms, but for some, may cause the sniffles, a rash or temperature.
Professor Hermione Lyall, Britain’s leading clinical expert in CMV, based at St Mary’s Hospital, says: “Generally speaking, most of us have it as we grow up and grow older, but it never really does us any harm.
“It only really causes a problem if you are a baby in the womb and you haven’t yet developed an immune system, or if you’re somebody who’s immunosuppressed.”
The bug can be passed between people in close contact through bodily fluids, including saliva, urine and faeces. It can therefore spread when sharing cutlery, straws or dummies and from mouth-to-mouth contact, such as kissing.
Pregnant women who work closely with children or already have a young family are more at risk of getting CMV, the NHS says.
Official advice to pregnant women or those around expectant mums is to follow four important rules (scroll down for more information).
1. Wash hands with soap after changing nappies or wiping kids’ noses
2. Avoid sharing food & drink with children, including glasses, straws & cutlery
3. Never put children’s dummies in your own mouth
4. Kiss your children on the forehead, not the mouth
‘Burst into tears’
Prof Lyall says midwives don’t receive extensive training on CMV.
“We got hold of the main textbook for midwives, and there was about six lines on CMV, and it’s not really correct or relevant to the modern world at all,” she says.
“Most people know about avoiding cat litter in pregnancy because you don’t want to get toxoplasmosis, or about avoiding soft cheese because you don’t want to get listeria.
“But the chances of getting either of these infections are absolutely minuscule, less than 20 cases a year, whereas there are up to 4,000 children a year born in the UK with CMV.”
A former primary school teacher, Helen had a “textbook pregnancy” before Alfie came along.
“He was born in my trousers at the front door of the hospital,” Helen recalls. A crash team rushed to the site and noticed Alfie had a pinprick rash all over his body.
Worried about the shock of the freezing December weather, they whisked him away to the Special Care Baby Unit. At first, the doctors and nurses didn’t seem too concerned.
Alfie cannot walk, stand or feed himself but his ‘laughs and smiles’ delight his devoted parents and sisters[/caption]
Helen feels ‘let down’ by the NHS, having never been told about the virus[/caption]
But the following morning, when Alfie’s father Dan arrived, the couple was ushered into a side room.
It’s just that total shock. I think I had that naïve belief that it would never happen to me
They were told that a brain scan had revealed multiple abnormalities and Alfie’s liver and spleen were enlarged. The news was devastating for the young couple.
“We burst into tears,” says Helen, who says they were not treated with compassion. A paediatrician allegedly told Dan: “You need to sort yourself out and man up. Your wife needs you.”
Helen says: “They started asking lots of questions – what was the pregnancy like? Did I have any food poisoning?
“Did I follow the guidelines of what you should and shouldn’t eat? I felt they were blaming me.”
With no clear answers, the hospital contacted the specialist infectious diseases team at St Mary’s Hospital, London, who recommended Alfie was tested for CMV. His viral load was then discovered to be ‘sky high’.
He was immediately given medication, which reduced the infection, but could not undo the damage to his brain.
Helen says: “It’s just that total shock. I think I had that naïve belief that it would never happen to me.”
Dr Payne says that the most dangerous time for a foetus is the first three months of pregnancy. But treating the mum can prevent the virus being transmitted to the baby.
‘He laughs, he smiles’
She is among experts calling for screening of all pregnant women, as is the case in parts of France, Spain and Greece, as well as in Ontario, Minnesota and New York State.
The UK’s National Screening Committee has to consider whether a screening programme for any condition is worthwhile – in this case, including whether it will cause alarm to parents.
A screening programme for CVM was rejected in 2017 and 2022. The NSC is due to consider testing both mothers and babies for CMV this summer, with an announcement expected in the autumn.
Dr Lyall says: “There’s competition from all kinds of things, such as screening for cancer, genetic diseases or metabolic diseases.
“The thing that is very tough for us is the fact that there’s an intervention that can prevent the virus from going across and causing damage to a baby, and we’re not able to offer that to women because we don’t diagnose that the infection is there.
“It’s only the more severe babies that get picked up, because we’re not screening for it, and so it’s just not out there that this is something that people need to worry about in pregnancy.”
The experts are also calling for CMV to be included in the heel prick test given to every newborn baby in the UK at five days, so that those affected can be identified quickly.
The charity Action on CMV estimates that the cost of caring for UK children born with the virus is over £750 million every year.
That includes direct costs to the NHS and social services, workdays lost by parents plus the expense of therapies and equipment. Helen cares for Alfie full time, but would like to return to work in the special needs sector.
I visit the family in their comfortable, detached home, and Alfie seems like a happy little boy. Dressed in a dinosaur T-shirt and leggings, he lies on a play mat surrounded by sensory toys, contentedly gurgling.
Though he cannot speak, Helen says he is very communicative.
Sometimes Dan and I wonder what Alfie would be like if he hadn’t been affected by CMV, would he be running around, terrorizing his sisters?
Helen
“He laughs, he smiles,” she says. “He’ll scream and shout if he’s not happy. He hasn’t got words, but he’s definitely got his own voice.
“If he’s upset, then it takes a while to sort of soothe him. And you wish, God, I just wish he could just tell me what is wrong.”
Alfie can’t eat solid foods, so doctors suggested a feeding peg that would deliver liquid food straight into his stomach via a tube.
Helen was against the idea, unless Alfie were to stop thriving. “We’ve worked so hard to keep him orally fed,” she says.
“He really enjoys flavoursome foods. Just last night, we were around at my parents’ and he was given a spoonful of lemon meringue pie filling, and then he’s immediately opening his mouth for the next spoonful. It’s just such a joy.
“And it is a social thing as well to eat, so we just don’t want him to lose that.”
Alfie attends a special needs school where he loves interacting with other children. He is also adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight.
“Sometimes Dan and I wonder what Alfie would be like if he hadn’t been affected by CMV, would he be running around, terrorizing his sisters?” says Helen.
He will always carry the virus, but it is now inactive. In 2019, Helen and Dan did the Tough Mudder 15km obstacle course challenge to raise £5,000 for the charity CMV Action, and since then have raised more.
But their main aim is to raise awareness, so that other children and families do not have to face the same heartache.
Helen says: “I still do feel quite guilty, because at the end of the day I caught the virus. So what if I hadn’t? If I hadn’t caught that virus, Alfie would be your average child and wouldn’t have to live such a challenging life.
“I don’t think that guilt will ever go, I just try and bury it.”
Helen and husband Dan want to raise awareness, so that other children and families do not have to face the same heartache as they have[/caption]
Alfie is adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight[/caption]
WHAT MUMS SHOULD BE WARNED
ADVICE from the NHS to pregnant women, or those trying for a baby:
- Wash hands using soap and water, especially after changing nappies or wiping your children’s snotty noses.
- Avoid sharing food, e.g. do not finish your children’s food.
- Do not share cutlery, straws or drinking glasses with your children
- Never put your children’s dummies in your own mouth.
- Kiss your children on the forehead – avoid kissing them on the mouth
- Regularly wash toys or other items that may have young children’s saliva or pee on them
- If you are unwell with an unexplained fever or rash during early pregnancy, ask your midwife or doctor for a test for CMV infection
