East Sussex family raise awareness about infection that left daughter with epilepsy and hearing loss

Six-year-old Meadow is among the one in 1,000 UK babies born each year who have permanent disabilities because of cytomegalovirus (CMV).

Meadow was diagnosed with CMV just a few days after her birth and received treatment for the disease.

But she now has several complications as a result of the condition, which include: brain abnormalities, epilepsy, hearing loss, right side weakness in her body and global development delay.

Meadow’s mother Lauren said, via the children’s charity Action Medical Research: “Meadow’s seizures are well managed with medication, but she does still seizure at least once a year for an hour or more. Twice the doctors have spoken about putting Meadow into an induced coma because no medication works or helps bring her out of her severe seizures. She is a lovely child but it is very challenging as she is non-verbal, cannot wash or dress herself and she still wears nappies even though she is six. We don’t know what the future holds, but we have to stay positive.”

Action Medical Research said they are now funding research into developing a new diagnostic tool that screens newborn babies for CMV. Visit www.action.org.uk/CMV. They said an estimated 2,400 babies in the UK – or one in 300 each year – are born with congenital CMV, adding that most will not have any symptoms at birth. However, the charity said but problems can appear months or even years later. Action Medical Research said one in five babies born with CMV will have permanent disabilities as a result of the infection. These can include: seizures, hearing problems, eye problems, liver and spleen problems, or developmental or learning difficulties.

The charity said early detection of CMV and prompt treatment improves outcomes and reduces the risk of permanent disabilities. They explained that, ideally, antiviral treatment should be administered in the first six weeks to maximise the effect, but said there is currently no routine CMV screening programme.

Lauren said: “A new device which gives results more quickly, means that treatment can start straightaway. This new device is too late for Meadow, but hopefully in the future it can help other babies.”

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In a statement released by Action Medical Research, professor Vincent Teng from Swansea University said: “Existing methods for detecting CMV are costly and time-consuming and can only be performed in a laboratory using specialist equipment. Our aim is to develop a low-cost, highly sensitive and easy-to-use point-of-care diagnostic device, which could be used to screen for CMV in newborn babies and provide rapid results.”

Dr Caroline Johnston, senior research manager, Action Medical Research said: “Action Medical Research has been funding medical breakthroughs for over 70 years. The research we have funded has helped to beat polio, prevent stillbirths and develop ultrasound scanning in pregnancy. The results of this research could be a significant breakthrough in diagnosing CMV in newborn babies and potentially avoiding the risk of long-term disabilities.”