It is the leading cause of birth defects in the UK and yet few of us have heard of Cytomegalovirus (CMV) – the virus that left Lyra severely disabled from birth. Her mother, Lucy, tells us what happened…
Lucy, 35, lives in Sussex with her partner and their two daughters Lyra, three, and Amber, 16 months. When she was born, Lyra was diagnosed with Cytomegalovirus (CMV) and is now blind, severely brain damaged and disabled.
In the UK alone, one in every 1000 babies born each year have permanent disabilities as a result of Cytomegalovirus (CMV); a virus contracted by the pregnant mother and passed to the unborn fetus, unknowingly, as the majority won’t experience symptoms.
It is the most common cause of disability at birth – above Down’s syndrome – and yet remains largely unheard of, so when Lucy was pregnant with her firstborn, she had no idea there was anything wrong.
She felt fine and nothing was flagged up during pregnancy, so she used a birthing centre in Sussex. But when Lyra was born, it was immediately clear that she was very ill so an ambulance took them straight to hospital.
She can’t see, sit up, play or feed herself. But she giggles, smiles and likes music and bells
“She had a really small head, a swollen stomach, was jaundiced and covered in what they call ‘blueberry muffin rash’ – lots of little bleeds under the skin,” explains Lucy, “that was the first observation”.
Once diagnosed with CMV, Lyra was treated with drugs but “none of them really knew what they were dealing with so they were having to seek advice from consultants at Evelina Children’s Hospital and King’s College,” says Lucy.
An MRI scan showed polymicrogyria – a malformation of the brain – and they were told it was as bad as it possibly could be. “They said that the worse case scenario was that she would never walk, talk, eat or recognise us,” she says.
At six months old, Lyra was diagnosed as blind. She then started having seizures. She now has epilepsy, as well as scoliosis of the spine – a result of cerebral palsy. She is fed through a tube going into her stomach.
“She can’t see, sit up, play or feed herself. But she giggles, smiles, likes music and bells, warm water – so baths and hydrotherapy. And she likes kicking her legs and being tickled,” says Lucy.
Many people contract CMV and may have the symptoms of a common cold, or not even notice. Once it’s in our system, it will likely not affect us again. But a pregnant woman who has never had the illness is at risk, as it can then be passed on to the fetus.
Lucy discovered from blood tests taken in the first trimester that she contracted it early on – “the worst time, as the brain in the fetus is developing,” she says. “We hear about not drinking alcohol or eating certain cheeses, so I avoided doing that but I didn’t know about this.”
Listeriosis, from eating mould-ripened cheese during pregnancy, results in around 30 babies a year to be born with defects; toxoplasmosis, from cat litter trays, affects 25 a year: that’s one tenth as many babies than those affected by CMV – and yet both are widely discussed.
I don’t think we talk about disability enough
In the UK, there is no routine screening for the virus during pregnancy so CMV Action campaign to raise awareness and to fight for better prevention measures within our health service.
As it is not known whether a woman has built a resistance pre-pregnancy, CMV Action advise keeping hands sanitised, and avoiding overly close contact (like kissing on the lips) with toddlers, who are often the cause of it spreading – especially if at nursery.
Lucy says that if she’d been tested for it, she would have discovered she hadn’t been exposed to the virus so could have taken precautions while pregnant. “Changing nappies, sharing cutlery – this is how it’s spread.”
Their life now revolves around medical appointments, therapy, hospital stays and planning to adapt their house. “There’s equipment everywhere: standing frames, specialised buggies, a brace for her spine, leg splints for her feet, a sleep system to keep her straight in bed.”
They were concerned that if they had another child, she might also be born with defects but an obstetrician advised them to go ahead, as it might “balance the family out.”
They did, and Amber was born – after a pregnancy fraught with anxiety, and extra scans – without any symptoms of the virus. “It has balanced life out a bit,” says Lucy, “but Lyra needs a lot of care so it feels a bit unfair on Amber sometimes.”
Disabled access isn’t always good. Suitable changing facilities are practically nonexistent. I have to lie on toilet floor to change her when we’re out
Lyra’s condition launched Lucy into a world of disability that she hadn’t noticed before. “It’s a club that no one really wants to be part of. But once there, you meet amazing people. You learn to fight – everything we get for Lyra we have to fight for.”
At the moment, Lyra is “small and very cute”, says Lucy, “so we tend to get good reactions. Other children are intrigued by her feeding tube and they find it hard to comprehend her lack of vision, so ask lots of questions.” She would like it if adults also asked questions, rather than just staring, or came up to talk to her; to touch her hand.
She feels that disabled people are hidden away, as it’s hard to get out. “Disabled access isn’t always good. Suitable changing facilities are practically nonexistent. I have to lie on the toilet floor to change her when we’re out.”
They raise money to get Lyra the care and equipment she needs through Life of Lyra and Tree of Hope. “Therapy is very expensive – equipment is incredibly expensive. We’re trying to get a specialist tricycle adapted. For Amber it would cost £30, while a trike for Lyra is £800.”
But while daily life is difficult, Lucy says that one smile from Lyla makes it all worthwhile. “It might sound cheesy but Lyra has taught me how to be patient. When she’s feeling well and fit and healthy and in a good mood, she’s so fun to be around. She’s just brilliant.”
For more information on about CMV, visit the CMV Action website.
(This article was originally published in November 2015)