[Missing Credit]Midwife Sara Barnett with Professor Hermione Lyall and Dr Ahmed Ali at St Mary’s Hospital
Baby Cosima was started immediately on antiviral drugs to prevent further harm, and she also began a battery of tests that are still ongoing five months later to find out exactly how she has been affected.
It was a “huge relief” when her eyesight was found to be normal. But the signs were not so reassuring for her hearing, a sense which is often affected by congenital CMV. The results from the simple test given to all babies were concerning enough for the family to be referred for an ABR (Auditory Brain Response) test. This would measure how well sound travels to the brainstem, using electrodes to assess the reaction of the hearing nerves and brain.
With the parents holding the child in a booth, different frequencies were fed to her through headphones. After each change, the doctor would come in looking serious and saying, “We still don’t have a reaction, we’re going to go even lower now,” recalls Sophia. “And then they would try and try, and then (the doctor) would come back into the booth and say, we still don’t have any reaction.”
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That was when the new mum hit rock bottom, “When she failed that hearing test completely, that’s the first time when I couldn’t hold those tears back any longer.” It was the bleakest day.
Sophia, who grew up in Jerusalem, is keen to spread the word about CMV so that other families can avoid having to face the same heartbreak.
It is estimated that up to 4,000 children a year are born with the virus in Britain, and 20 per cent of them will go on to experience serious health consequences, including deafness, cerebral palsy, seizures, as well as communication, coordination and learning difficulties.
The cost to the NHS has been calculated by the charity MV Action to be £750 million a year. Yet awareness among the public and even healthcare workers is low.
“The majority of times when parents get the diagnosis of congenital CMV in their baby, they have never heard of the virus,” says midwife Sara Barnett. “Their ideal of taking home a newborn, healthy child is absolutely ripped away from them, and they’re faced with a whole litany of morbidity and testing and hospital appointments that they never envisaged.”
Barnett is a research midwife at London’s Imperial College, a specialist centre for CMV. The team there under Professor Hermione Lyall is campaigning to educate medical professionals – especially midwives – as well as the public about CMV. She says: “We are trying to highlight awareness of CMV, and the steps families can take to prevent the risk of transmission.”
The virus is passed on in saliva and urine – meaning that pregnant women with younger children are very much at risk. Barnett says women should wash hands thoroughly after changing nappies or wiping children’s noses, never share their cutlery or finish their food. Sanitising dummies by sucking them, and kissing children on the lips is something that pregnant women should avoid at all costs.
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Antenatal care usually includes warnings about the risks of congenital birth defects caused by toxoplasmosis and listeria from soft cheese, even though these are actually far rarer than CMV. Sophia and David selected the maternity department of a well-regarded hospital for antenatal care and childbirth, but nobody there ever warned them about the virus, which some have dubbed a “Cinderella” infection.
In some parts of the world including Israel, pregnant women and newborns may be routinely screened for CMV. Here in Britain Barnett suggests blood samples taken routinely at the first antenatal appointment and the heel-prick blood spots taken from all babies at five days would be an opportunity to test, but currently this is not done. “One thing that we’re very keen on in our clinic is to diagnose babies as soon as possible,” she says. “Ideally to diagnose congenital CMV, the baby should be tested before 21 days of age, because antiviral treatment that can stabilise and improve outcomes should really be started before one month of age.”
The UK’s national screening committee is due to consider adding CMV to the list of diseases that are routinely screened for this summer, but there is tough competition from advocates of other conditions including cancers and dementia. They are due to report in the autumn.
Meanwhile, the signs for baby Cosima are improving. “She’s developing quite well, actually, so we’re very hopeful,” says Sophia. Cochlear implants, surgical devices implanted in the head which should help her to hear sounds and learn to speak normally, can be given to children as young as nine months.
Cosima is responding well to physio and other therapies, and her personality is beginning to emerge. “We enjoy her very much. She’s very giggly and very smiley. She’s a beautiful baby, we love her to bits, and we try to enjoy her as a baby as much as possible,” says Sophia, who has put her career on hold for now.
“But it’s impossible at the same time, not to look out for all these things that might be happening and not be worried about them. That’s probably the rollercoaster we’re going through every day, not knowing what her future will hold.”
Barnett, who founded the Jewish Nurses and Midwives Association over 30 years ago, has a particular message for the community,
“Everybody wants the best care for their labour and their unborn baby. But we’re not immune. It’s not something like Tay-Sachs, where it’s a specifically Jewish problem, but it’s a universal problem, and we have to inform ourselves to protect our families.”
For more information, go to https://cmvaction.org.uk/
