Mum gives backing to new group B strep trials
WHEN baby Elsie Davies was brought into the world following her mum’s very quick labour, it was immediately clear that something was wrong.
The newborn was described as “floppy and blue” and needed to be resuscitated by doctors, who had to clear large amounts of blood in her tiny mouth and nose.
Distressed mum Bethany Davies was only able to have a brief cwtch with her daughter before she was rushed to the neonatal unit for urgent tests.
“What should have been a happy family time was an unbelievable nightmare,” she said.
“It’s almost a blur as it was so traumatising. I still find it hard to process how bad it was.”
In the immediate aftermath of Elsie’s birth on May 31, 2018, she was given antibiotics, placed on breathing support and had a feeding tube inserted.
Medics warned Bethany and her husband Alex Davies, from Dinas Powys, Vale of Glamorgan, that their daughter’s infection markers were dangerously high and it was unclear whether she would survive.
To find out the cause of her serious ill-health, the tot needed two lumbar punctures, blood tests, two brain x-rays and two body scans.
After three days, the family were told she had sepsis caused by group B streptococcus.
“I had heard of group B strep, but I had absolutely no idea how serious it was and that it could be life-threatening for newborns,” said Bethany, 26.
“I feel so guilty that I did not know more as I would have got myself tested and Elsie might not have had to go through all of this.”
Group B streptococcus, also known as group B strep, GBS or Strep B, is the most common cause of lifethreatening infection in newborn babies.
It causes a range of serious infections including sepsis, pneumonia and meningitis, and if left untreated can kill a newborn baby within hours.
It is carried by many adults quite normally and causes no harm, but it can prove fatal if transmitted to a baby during labour.
Elsie spent 12 days in the neonatal unit at the University Hospital of Wales (UHW) in Cardiff, followed by a two-day stint at the Royal Glamorgan Hospital in Llantrisant, where she made excellent progress.
She was then discharged home to meet her three-year-old brother, Eli, for the first time. He had been looked after by Bethany and Alex’s family while they stayed in the Ronald McDonald House opposite UHW.
Bethany, who said Elsie and big brother Eli now have “the cutest relationship”, admitted it has taken her a long time to come to terms with what happened.
“We’re just so grateful that Elsie is well now, and while in some ways it’s like it never happened, the reality was that I found the first year, in particular, really hard and avoided going out as I felt so anxious about Elsie,” she said.
“I’ve also found it really hard mentally as I blamed myself for making Elsie ill as she caught the infection off me.”
The NHS does not routinely offer antenatal testing for group B strep, unlike most high-income countries including the United States, Canada, Germany, France and Spain.
Currently, the test can be carried out privately at a cost of around £35. It is thought it would cost the NHS £11 a time to carry out the test themselves.
However, there is now renewed hope that the health service is beginning to put preventative measures in place.
A new clinical trial which will involve 80 hospitals in Wales, England and Scotland has just received the go-ahead from the Health Research Authority in England and Health & Care Research in Wales.
The £2.8m GBS3 trial, funded by the National Institute for Health Research (NIHR), will involve at least 320,000 women, with recruitment beginning in spring 2020.
It will look at the effectiveness of two different tests compared with standard care – a lab-based enriched culture medium (ECM) test at 35 to 37 weeks of pregnancy, and a “bedside test” at the start of labour.
The ECM test is currently recommended for use on high-risk groups in late pregnancy by the Royal College of Obstetricians and Gynaecologists’ clinical guidelines.
Jane Plumb, chief executive of Group B Strep Support, said: “The results of this major trial will drive improvements in UK and international policy and lead to fewer babies and their families suffering the trauma that group B strep infection can bring.
“After routine testing was introduced in the United States, the rate of early-onset group B strep infection dropped by over 80% and is now less than half that of the UK.
“Were the same to happen in the UK, approximately 350 babies every year would be protected from group B strep infections, saving 15 babies’ lives and preventing another 15 from developing life-changing disability. We have to do this.”
Dr Kate Walker, clinical assistant professor of Obstetrics and GBS3 Trial co-lead, said: “At the moment, we’re in a situation where we’re missing lots of babies whose mums don’t have risk factors but do carry the bacteria and giving antibiotics to women who don’t carry the bacteria.”
The other lead, Dr Jane Daniels, added: “We want to answer the question for the NHS: should you test pregnant women for group B strep or not, and if you’re going to test, is it better to do a culture test at 35 to 37 weeks pregnancy or a bedside test?
“Hopefully, the trial will answer these questions. We believe that, if testing is proved effective, this would mean that the right women get the right antibiotics.”
Bethany concluded: “If I could stop one family going through what we went through by raising awareness of group B strep and the fact that you can get tested privately, if needs be, then I will have achieved something.”