First-time parents have told how a life-changing infection in their baby that they had never heard of before became their “worst nightmare”.
Deb Twell’s son William developed one Group B Strep infection (GBS) in the second week of his life, which will leave him with lifelong complications.
“We were not really sure what was happening, but it turned out to be our worst nightmare,” Ms Twell said.
Group B Strep is a type of streptococcal bacterium that is very common and lives in one-fifth of all women’s vagina and intestines as part of the “normal flora”, said Dr. Kate Walker, Clinical Associate Professor of Obstetrics at the University of Nottingham.
“It is generally harmless and asymptomatic. The only time it has an implication is during pregnancy, ”she said.
Occasionally, the bacteria can pass from the mother to the baby during birth, which can lead to an early-onset Group B Strep infection (GBS) in the first seven days of a baby’s life.
Most babies with a GBS infection recover fully, but some develop severe conditions such as sepsis or meningitis, which can lead to lifelong complications and even death.
Parents are calling for routine preventive testing that would cost the NHS only £ 11 per test according to campaigners, but doctors estimate the price to be slightly higher at £ 15 to £ 20.
Pregnant women can take an Enriched Culture Medium inoculation test between 35 and 37 weeks of pregnancy to find out if they carry the bacteria.
Currently, patients can pay around £ 40 to get one private GBS test.
If they are positive for GBS, they will be offered intravenous antibiotics during birth to reduce the risk of their baby developing an infection by up to 91 percent, according to the charity Group B strep support.
How common is group B strep?
On average, two babies in the UK develop a GBS infection every day, according to GBS Support.
Most recover fully, but one baby dies every week from the infection, and one baby each week recovers with a life-changing disability.
About 800 babies a year develop group B strep infection, about 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 call 999 or go to the emergency room if a baby develops the following symptoms:
- Being floppy or not responding
- Grunting when breathing, or working hard to breathe when looking at their chest or abdomen
- Very fast or slow breathing
- A very fast or slow pulse
- An unusually high or low temperature
- Changes in their skin color or blemished skin
- Do not eat well or vomit
- An unusually fast or slow pulse
Most early-onset infections appear within the first 12 hours after 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. Most babies can be effectively treated with penicillin.
Some will require treatment from a specialized neonatal intensive care unit.
“We can and must do more,” said Jane Plumb MBE, CEO and co-founder of Group B Strep Support, which calls for routine preventive testing on the NHS.
Other developed high-income countries such as the United States, Canada, Germany, France and Spain are already routinely testing pregnant women for GBS.
The UK is currently preventing GBS by assessing a number of risk factors to determine whether a woman should be offered intravenous antibiotics during childbirth.
According to Dr. Walker prevents this 90 percent of infections. However, the system is “imperfect”, as 71 percent of women with risk factors do not carry the bacteria, while 17 percent of women without risk factors carry GBS and do not receive antibiotics.
Dr. Walker is working on one clinical trials to compare the laboratory-based preventive test with the “bedside test” at the onset of labor, which is currently in place in the UK.
The trial will involve 80 hospitals and 320,000 women and is expected to be completed in 2024.
Critics of routine preventive testing argue that too many women would receive antibiotics during childbirth, which comes with risks such as maternal anaphylaxis and antimicrobial resistance.
First-time parents Sam and Debs Twell have created one petition requires routine GBS testing and they currently have over 6,000 signatures.
Their baby, William Twell, was born on June 6 last year as a healthy baby, but 16 days later he was rushed to the hospital where he suffered severe seizures and seizures.
He had developed a late-onset group B strep infection, which left him with visual disturbances, lifelong heart complications, hydrocephalus – accumulation of fluid in the brain – and significant developmental delay.
A few days before William was admitted, Sam, 31, and Debs, 33, had noticed he was irritable, but as new parents, they were not sure what was wrong. When he got a high temperature of about 38 degrees, they called 111, who advised them to hurry to the hospital.
“We were still completely unaware of what was going on,” Debs said.
“It was only when we heard a nurse say 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 Lincoln Hospital to an intensive care unit in Leicester after he “took a turn for the worse”, Debs said.
“It was just a huge whirlwind. We were not quite sure what was going on, but it turned out to be our worst nightmare, ”she added.
Even when the blood test results came back positive for Group B Strep, Sam and Debs had never heard of it, nor had they been warned of any of the signs by doctors.
“I think if we had had some kind of knowledge or had been tested positive, then maybe we could have been more aware of the point where he was irritable for about three days before we ended up in the hospital,” Debs said. .
Dr. Kate Walker said the NHS should provide all pregnant women with information about Group B Strep, which was co-produced by Royal College of Obstetricians and Gynecologists and group B strep support.
Like Sam and Debs, the mother of two Eilidh Wise had never heard of GBS before her second child, Peter, developed an early-onset infection just 28 hours old in April 2019.
“When they told us that Peter had GBS, I had no idea what it was, I had never heard of it,” said Eilidh, 29. “They gave us a leaflet and they told us that if he survived, we would “we need to prepare for him possibly becoming a long-term handicap,” she added.
Her newborn baby was transferred to one Neonatal intensive care unit at Sunderland Royal Infirmary to receive treatment for GBS, meningitis and sepsis.
It was “touch and go,” Eilidh said, but after about four days, Peter stopped having seizures, and the straight face doctor treating him smiled for the first time.
“That’s where Peter’s story turns when the doctor smiled,” Eilidh said, adding: “From that moment on, instead of constantly being on the edge, it felt like we were now on a journey to get it. better.”
Peter’s MRI scan showed he was not suffering from brain damage and he was discharged from hospital after three weeks, leaving the family to “return to normalcy” on their farm in Hexham, Northumberland.
Eilidh and her husband Richard, 32, are looking for routine preventive testing and more attention around GBS, after finding out that some midwives and doctors may be “very repulsive” to the infection because it is not very common.
“For parents who have been affected by it, it’s almost insulting,” she said I.
Although her baby survived without any life-changing disability, the experience was traumatic for Eilidh and her family.
“It’s a scar, it will never quite heal after what happened,” she said. “It is not just one baby that is affected. It’s a whole 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 transmission of bacteria during childbirth, whereas late-onset bacterial infections can be acquired after childbirth.
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 recover fully, but one in every 16 babies who develop group B streptococci during their first three months die, and about one in ten survivors has a long-term disability.
GBS can cause sepsis, pneumonia and / or meningitis, which can leave babies with a variety of physical or mental disabilities.
Baby William Twell’s infection came from late-onset GBS, which appears after the first seven days of life and can be acquired after birth. Therefore, tests during pregnancy and antibiotics during childbirth are far less effective.
“What we need to prevent late-onset infection is a group B Strep vaccine for pregnant women and they are under development,” said Dr. Walker.
Debs said they know “deep down” that the situation was out of their hands, but when they investigated Group B Strep and realized that a preventative test was available, they wanted to raise awareness.
“As much as it hurts, we can not change what happens to us, but we can potentially have an impact on other families and prevent others from going through what we have. And if we can do that, then we have done our job, ”Debs said.
For now, the couple can only support William and celebrate every little step he takes.
“We will keep it with us forever, no matter what happens,” Debs said. “He’s done so well. He’s come this far. And we will always celebrate him no matter what.”
A spokesman for the Department of Health and Social Care said: “We are determined to increase maternity care – from tackling inequalities through our new maternity differences Taskforce, to protecting pregnant women and their babies from group B streptococcal infections.
Pregnant women who have been identified as at risk of having a baby with this infection are offered antibiotics during childbirth, allowing for priority care and treatment for those we know are most vulnerable.
“The National Institute of Health Research is also funding a large-scale clinical trial to explore universal screening for group B strep during pregnancy.”