Newborn babies are being put at risk by an infection caught from their mothers and crucial research into how to prevent its spread is in jeopardy, according to campaigners.
Jane Plumb has been fighting for the routine testing of pregnant women since she lost her 17-hour-old son Theo in 1996 as a result of a Group B strep infection passed on during labour.
Medical research is now underway to assess the effectiveness of such testing but the trial needs 80 hospitals to get involved and so far only 30 have signed up.
“It really is a now or never moment,” said Ms Plumb, who is the chief executive of Group B Strep Support.
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“Without having the robust evidence, policy won’t change and the trial is absolutely the best and probably only shot at being able to get the evidence to affect change.”
Group B strep, short for streptococcus, is a type of bacteria.
Between two and four in every ten women carry it but there’s a small risk it can spread to the baby during labour, making them ill.
This happens in about 1 in 1,750 pregnancies.
“Roughly two babies a day develop Group B strep infection, typically sepsis, pneumonia or meningitis,” Ms Plumb added.
“One of those babies, every week, dies and another baby survives with lifelong disability. And this is unforgivable because most of these infections are preventable.”
The answer, she said, is for antibiotics to be given to those who test positive for the infection.
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Other countries do offer testing and Ms Plumb said the UK “needs to catch up”.
“Most developed countries, including France, Germany, Spain, the US, routinely offer pregnant women a test for Group B strep during pregnancy and then offer antibiotics in labour, and they’ve seen their rates of these infections fall dramatically,” she added.
‘I remember feeling incredibly guilty’
Kate Rogers sought the help of the group when her son Frank was born five years ago.
He seemed healthy at first but quickly stopped feeding and within hours had a seizure.
Doctors broke the news that her three-day-old son was critically ill with meningitis.
It was the result of a Group B Strep infection that would leave him with cerebral palsy and epilepsy.
“I remember feeling incredibly guilty that it was an infection that I had carried and passed on to Frank and also that I didn’t know about it,” said Ms Rogers.
“I hadn’t read enough. I hadn’t done enough research. That was how I remember feeling at the time – just really responsible for passing this on and not knowing.”
Like Jane, she is urging hospitals to join the trial, led by researchers at the University of Nottingham, before the deadline at the end of September.
Frank is thriving despite his disability, but Ms Rogers is determined to prevent other babies from being put at risk.
“Frank’s incredible and amazing and we wouldn’t change him for the world,” she said.
“It’s just it is difficult to know that this could have been prevented.”
A Department of Health and Social Care spokesperson said protecting pregnant women and their babies from disease is an “absolute priority”.
“Those identified at risk of having a baby affected by this infection are offered antibiotics in labour, enabling priority care and treatment for those we know are most vulnerable,” they said.
“There is currently insufficient evidence regarding the benefits of universal screening in relation to the potential harms, but we keep this evidence under review and will consider the results of an ongoing large-scale clinical trial when it reports.”