Latest news with #CMV
CBS News
2 days ago
- Health
- CBS News
Pennsylvania mom raising awareness about CMV after infant daughter develops hearing loss
June is Cytomegalovirus (CMV) Awareness Month, and many parents have never even heard of it. According to the Centers for Disease Control and Prevention, CMV is the leading infectious cause of birth defects in the United States and can have lifelong consequences. A 2-month-old girl from Landenberg, Chester County, is battling the effects of CMV with help from a team of doctors at Nemours Children's Hospital in Wilmington. Callie Resler, who was born on April 25, has permanent hearing loss in her left ear because of congenital CMV, according to her mother, Lindsay Resler. "Her right ear is mildly damaged and her left ear is currently severely damaged," Lindsay Resler said. "With CMV, it can progress and get worse throughout their whole childhood. We're hopeful that both ears will hang on, but her left ear could fully become profoundly deaf, which would lead to cochlear implants." CMV causes mild symptoms in healthy adults, but can be dangerous when passed from mother to baby in the womb, according to experts. "If it's very early in pregnancy, sometimes the result can be very serious," pediatric infectious disease doctor Jennifer Vodzak, from Nemours Children's Hospital, said. "It can lead to a miscarriage and sometimes can lead to very serious birth defects for an infant." Lindsay Resler found out her daughter had CMV after she failed her hearing tests. According to the Pennsylvania Department of Health, babies who do not pass their hearing screening test should be tested for CMV within 21 days of birth. Congenital CMV infection is diagnosed with a urine, saliva or blood test. "We had no idea," Lindsay Resler said. "I had a healthy pregnancy." Lindsay Resler believes she caught CMV during pregnancy from her 2-year-old daughter Lily Resler, who goes to daycare. Toddlers can carry the virus without symptoms, and it can spread through saliva or contact with toys. "So that's why it really is crucial if you are pregnant with younger kids, just to be really diligent with not sharing utensils, washing your hands, just all of those things," Lindsay Resler said. Vodzak, one of seven doctors working with the family, started Callie on antiviral medication to slow the virus and protect her body. "There are some researchers, and so hopefully some success ahead in the near future, about a possible vaccine for CMV," Vodzak said. Until then, Lindsay Resler is on a mission. She is pushing for CMV screening during pregnancy and raising awareness among moms everywhere. "It's just important to really jump on everything right away within that first month of birth so that hopefully they can live as normal of a life as possible," Lindsay Resler said.
The Irish Sun
24-06-2025
- Health
- The Irish Sun
My world shattered when ‘kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading
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. 7 Helen Harrison, 40, unknowingly caught cytomegalovirus (CMV) while pregnant Credit: supplied 7 The mum-of-four passed on the common virus to baby Alfie in the womb Credit: supplied 7 Severely disabled Alfie, now six, has cerebral palsy, epilepsy, limited vision and a learning disability due to the virus Credit: supplied Now six years old, severely disabled Alfie has 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 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 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. The signs of common virus that could be deadly to babies - and how to spot them in your tot 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. 7 Alfie cannot walk, stand or feed himself but his 'laughs and smiles' delight his devoted parents and sisters Credit: supplied 7 Helen feels 'let down' by the NHS, having never been told about the virus Credit: supplied 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 '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, 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 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.' 7 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 Credit: supplied 7 Alfie is adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight Credit: supplied 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
The Hindu
24-06-2025
- Health
- The Hindu
KIMSHEALTH performs two allogeneic stem cell transplants, one a complex half-match procedure
KIMSHEALTH Cancer Centre has successfully performed two allogeneic stem cell transplants, including a complex and highly challenging haploidentical (half-match) transplant, a press release issued by the hospital said here. Allogeneic stem cell transplant involves replacing diseased stem cells in the bone marrow with healthy ones from a donor. In haploidentical or half-match transplants, the recipient shares only a partial genetic match with the donor, who is usually a family member. The half-match transplant was performed on a 37-year-old woman diagnosed with acute myeloid leukemia (AML). Although her sister was the donor, their incompatible blood groups made the procedure particularly complex. To further compound the challenge, the patient was also battling multi-drug resistant bacterial infections and aspergillosis — a fungal infection that typically affects immunocompromised individuals. After the transplant, she contracted cytomegalovirus (CMV), a viral infection, for which she was treated with antivirals. Despite these life-threatening complications, the patient made a full recovery. A bone marrow assessment conducted 100 days after the transplant confirmed that she was disease-free. The second successful transplant involved a 63-year-old male patient, also diagnosed with AML, who underwent an allogeneic transplant from a fully matched sibling donor. Despite the age- related risks and potential complications involved, the patient showed remarkable progress and is in remission as of day 100 post-transplant., the press release said. 'Haploidentical transplants, especially in cases where blood groups are incompatible, demand an advanced skill set and precision,' it said. The treatment was led by Bijay P Nair, Senior Consultant , Department of Clinical Hematology and Bone Marrow Transplant . The team Included K. S. Lekshmon and Aswin V. Nair, Associate Consultants and Sanooja Pinki, Department of Transfusion Medicine, KIMSHEALTH.
Scottish Sun
24-06-2025
- Health
- Scottish Sun
My world shattered when ‘kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading
Helen Harrison passed a virus to her son in the womb... but by the time she was told about it, it was too late - Alfie had irreversible brain damage MUMS BEWARE My world shattered when 'kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) 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. 7 Helen Harrison, 40, unknowingly caught cytomegalovirus (CMV) while pregnant Credit: supplied 7 The mum-of-four passed on the common virus to baby Alfie in the womb Credit: supplied 7 Severely disabled Alfie, now six, has cerebral palsy, epilepsy, limited vision and a learning disability due to the virus Credit: supplied 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. The signs of common virus that could be deadly to babies - and how to spot them in your tot 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. 7 Alfie cannot walk, stand or feed himself but his 'laughs and smiles' delight his devoted parents and sisters Credit: supplied 7 Helen feels 'let down' by the NHS, having never been told about the virus Credit: supplied 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.' 7 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 Credit: supplied 7 Alfie is adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight Credit: supplied
The Sun
24-06-2025
- Health
- The Sun
My world shattered when ‘kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading
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. 7 7 7 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. The signs of common virus that could be deadly to babies - and how to spot them in your tot 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. 7 7 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. '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.' 7 7 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
