Life-changing Group B Strep infection in our baby son became our worst nightmare,' say parents - iNews
First-time parents have told of their "worst nightmare" after their newborn son was left with life-changing disabilities from an infection that they had never heard of before.
Debs Twell's son William developed a Group B Strep infection (GBS) in the second week of his life that has left him with life-long complications. "We weren't really sure what was happening but it turned into our worst nightmare," Mrs Twell told i.
Group B Strep is a type of streptococcal bacteria that is very common and lives in one fifth of all women's vaginas and guts as part of the "normal flora", said Dr Kate Walker, Clinical Associate Professor in Obstetrics at the University of Nottingham.
"It's generally harmless and symptomless. The only time when it has an implication is during pregnancy," she said.
Occasionally, the bacteria can pass from the mother to the baby during the birth process which can lead to an early-onset Group B Strep (GBS) infection in the first seven days of a baby's life.
Most babies with a GBS infection make a full recovery but some develop serious conditions such as sepsis or meningitis which can lead to life-long complications and even death.
Parents are now calling for routine preventative testing that would cost the NHS just £11 per test according to campaigners. Medics estimate the price to be a little higher at £15 to £20 per test.
Mrs Twell and her husband Sam have set up a petition calling for routine GBS testing and they currently have over 6,000 signatures.
Their baby William Twell was born on 6 June last year as a healthy baby but 16 days later he was rushed to hospital and was having severe seizures and fits.
He had developed a late-onset Group B Strep infection which has left him with visual impairment, lifelong heart complications, hydrocephalus, which is a build up of fluid on the brain, and significant developmental delay.
A few days before William was hospitalised, Mr Twell, 31, and Mrs Twell, 33, had noticed that their son was irritable but as new parents, they were not sure what was wrong. When he spiked a high temperature of around 38 degrees, they called 111 who advised them to rush to hospital.
"We were still completely unaware of what was going on," said Mrs Twell. "It wasn't until we overheard a nurse saying to someone, 'there's a seriously ill baby next door' that it dawned on us that things were not looking good."
William was transferred from the Lincoln hospital to an intensive care unit in Leicester after he "took a turn for the worst", said Mrs Twell.
"It was just a huge whirlwind. We weren't really sure what was happening but it turned into our worst nightmare," she added.
Even when the blood test results came back positive for Group B Strep, the couple said they had never heard of it, nor had they been warned of any of the signs by doctors.
"I think if we had some sort of knowledge or had tested positive, then maybe we could have been more mindful of that point when he was irritable for about three days before we ended up in hospital," she said.
Pregnant women can take an Enriched Culture Medium swab test when they are between 35 and 37 weeks to detect whether they are carrying the bacteria. Currently, patients can only access the tests privately for around £40.
If they are positive for GBS, they will be offered intravenous antibiotics during labour to reduce the risk of their baby developing an infection by up to 91 per cent, according to charity Group B Strep Support.
Group B Strep
How common is Group B Strep?
An average of two babies in the UK develop a GBS infection each day, according to GBS Support.
Most recover fully but one baby each week dies from the infection, and one baby each week recovers with a life-changing disability.
Around 800 babies a year develop Group B Strep infection, around 50 babies will die and 75 will survive with a long-term disability.
What are the signs of a Group B Strep infection?
The NHS advises parents to dial 999 or go to A&E if a baby develops the following symptoms:
- Being floppy or unresponsive
- Grunting when breathing, or working hard to breathe when you look at their chest or stomach
- Very fast or slow breathing
- A very fast or slow heart rate
- An unusually high or low temperature
- Changes in their skin colour or blotchy skin
- Not feeding well or vomiting
- An unusually fast or slow heart rate
Most early-onset infections show within the first 12 hours of birth but can develop up to seven days after.
Late-onset infections are much rarer but can develop up to three months after birth.
What is the treatment?
If a baby tests positive for GBS, they will be given intravenous antibiotics. The majority of babies can be effectively treated with penicillin.
Some will require treatment from a specialist neonatal intensive care unit.
"We can and must do more," said chief executive and co-founder of Group B Strep Support Jane Plumb MBE, who is calling for routine preventative testing on the NHS.
Other high-income developed countries such as the United States, Canada, Germany, France and Spain already routinely test pregnant women for GBS.
The UK currently prevents GBS by assessing a range of risk factors to determine whether a woman should be offered intravenous antibiotics during labour.
According to Dr Walker, this prevents 90 per cent of infections for those with risk factors. However, the system is "imperfect" as 71 per cent of women with risk factors don't carry the bacteria, while 17 per cent of women without risk factors do carry GBS and don't get antibiotics.
Dr Walker is working on a clinical trial to compare the lab-based preventative test with the risk factor method currently in place in the UK.
The trial will involve 80 hospitals and 320,000 women and is set to conclude in 2024.
Critics of routine preventative testing argue that too many women would be given antibiotics in labour which comes with risks such as anaphylaxis in the mother and anti-microbial resistance.
Dr Kate Walker said the NHS should be providing all pregnant women with information about Group B Strep, which was jointly produced by the Royal College of Obstetricians and Gynaecologists and Group B Strep Support.
More on Health
Like Mr and Mrs Twell, mother-of-two Eilidh Wise had never heard of GBS before her second child Peter developed an early-onset infection at just 28 hours old in April 2019.
"When they told us Peter had GBS, I didn't have a clue what it was, I had never heard of it," said Mrs Wise, 29. "They gave us a leaflet and they told us that if he survived, we'd have to prepare ourselves for him being possibly long-term disabled," she added.
Her newborn baby was transferred to a Neonatal Intensive Care Unit at Sunderland Royal Infirmary to receive treatment for GBS, meningitis and sepsis.
It was "touch and go", said Ms Wise but after around four days, Peter stopped having fits and the straight-faced doctor who was treating him smiled for the first time.
"That's where Peter's story turns around, when that doctor smiled," said Mrs Wise, adding: "From that moment on, instead of being constantly on edge, it felt like we were now on a journey to get better."
Her son's MRI scan showed that he did not suffer brain damage and he was discharged from hospital after three weeks, leaving the family to "get back to normality" on their farm in Hexham, Northumberland.
Mrs Wise and her husband Richard, 32, are calling for routine preventative testing and more awareness around GBS, after finding that some midwives and doctors can be "very dismissive" of the infection because it is not very common.
"For parents who have been affected by it, it's almost insulting," she told i.
Although her baby survived without any life-altering disabilities, the experience was traumatising for the family.
"It's a scar, it's never going to fully heal after what happened," she said. "It's not just one baby who's affected. It's an entire family."
What is early-onset versus late-onset infection?
Early-onset Group B Strep infection occurs in the first seven days of life, and late-onset infection occurs after seven days.
Early-onset infection is thought to be due to the transfer of the bacteria during the process of birth, whereas the bacteria for late-onset infections can be acquired after birth.
What can happen to babies with GBS?
Approximately one in every 1,000 babies born in the UK each year develops group B Strep infection.
Most babies make a full recovery but one in every 16 babies who develop Group B Strep infection during their first three months die, and around one in every ten survivors have a long-term disability.
GBS can cause sepsis, pneumonia and/or meningitis which can leave babies with a range of physical or mental disabilities.
Baby William Twell's infection came from late-onset GBS which presents itself after the first seven days of life and can be acquired after birth. Therefore, testing during pregnancy and antibiotics during labour is far less effective.
"What we need to prevent late-onset infection is a Group B Strep vaccine for pregnant women and those are in development," said Dr Walker.
Mrs Twell said they know "deep down" that the situation was out of their hands but when they researched Group B Strep and realised there was a preventative test available, they wanted to raise awareness.
"As much as it hurts, we can't change what's happening to us, but we can potentially have an impact on other families and stop anyone else going through what we have. And if we can do that, then we've done our jobs," said Mrs Twell.
For now, all the couple can do is support William and celebrate every small step he makes.
"We will hold that with us forever that no matter what's going on," she said. "He's done so well. He's come so far. And we'll always celebrate him no matter what."
A Department of Health and Social Care spokesperson said: "We are determined to level up maternity care – from tackling inequalities through our new Maternity Disparities Taskforce to protecting pregnant women and their babies from group B streptococcus infections.
"Pregnant women identified as 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.
"The National Institute for Health Research is also funding a large-scale clinical trial to explore universal screening for group B strep in pregnancy."
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