Mylo's story
Congenital CMV
Mylo was diagnosed with congenital cytomegalovirus (CMV) when he was three months old. CMV is a common and usually harmless virus. But it can sometimes cause serious disabilities in babies who contract it during pregnancy. Sadly Mylo, now eight, has been severely affected.
When Mylo was born, his parents Ruth and Adam already knew there was potentially something wrong. A routine scan at 36 weeks had shown excess fluid on his brain, but the cause was unknown. He spent his first 48 hours in the neonatal unit, needing support to regulate his temperature and blood sugars. But he responded quickly and was well enough to come home within a few days – though the family still didn’t know what challenges may yet lay ahead.
Within a few days, Mylo had failed his newborn hearing test and soon he was missing early milestones. When he was three months old, he was finally diagnosed with congenital CMV, after a doctor suggested going back to his Guthrie card to do further tests on his newborn bloods.
Mylo was offered antiviral drugs which can, especially if given soon enough, help to limit the damage caused by the virus. The family initially felt optimistic. But sadly, their hopes soon faded.
“We were hoping for a miracle treatment,” says Ruth. “But as time went on his complex needs emerged, seemingly more by the day. Whether his brain had already been too badly damaged already, or whether it was too late by three months, it didn’t appear to make any significant difference.”
It was difficult to comprehend – and still is now – how Mylo would be one of the children that is affected so severely
Mylo, now eight, is profoundly deaf in one ear, with milder hearing loss in the other. He also has cerebral visual impairment and is completely non-verbal, communicating only by crying and laughing. His mobility is limited to being able to take just a few steps unaided.
“Mylo is the light of our life, but caring for a child with his needs is not easy by any stretch of the imagination,” says Ruth.
“Had we known at birth that Mylo had CMV, he could have had immediate treatment, which may have made it more successful,” says Ruth. “We were told that ideally it should be administered within six weeks to maximise the effect. That Mylo has been affected so severely is still a hard pill to swallow.”
An estimated one in 150 babies are born with CMV in the UK – and sadly, around two to three babies born every day will go on to experience serious health problems as a result of this infection. Most will have no symptoms but may develop problems months or even years later, which is often too late for treatment.
Early detection can help to improve outcomes, but there is currently no routine screening for newborn babies. This is partly due to the lack of a suitable diagnostic device.
Action Medical Research is funding research that aims to change this. Professor Vincent Teng and his team at Swansea University are developing a new, low-cost, highly sensitive test device. This could give rapid results, enabling timely treatment to help more babies.