‘It felt like I’d lost a limb’: mother says baby’s common life-threatening condition needs routine NHS testing

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Toni Alonzo-Grazier found herself waking up in the night having dreamt of hospital alarms sounding in the aftermath of her child being diagnosed with a common life-threatening bacterial infection.

Doctors discovered something was wrong with her baby after he started grunting – with hospital staff then learning he had a fast heart rate.

Her newborn was placed in intensive care for a week as doctors sought to treat his group B streptococcus – with the baby contracting the illness again and later being readmitted to hospital for another 12 days.

The fear that her baby would die had a long-term impact on her mental health: Ms Alonzo-Grazier’s therapist says the ordeal left her with borderline post-traumatic stress disorder.

She was discharged after his birth, while her son was kept in hospital for several days as doctors scrambled to work out what was wrong with him.

“Being discharged without him was the worst thing I’ve ever gone through,” Ms Alonzo-Grazier tells The Independent. “I cried all the way out of the hospital. I can still picture that walk out of the hospital.”

The 36-year-old, who lives in the West Midlands, is now calling for all pregnant women to be offered a free test for the life-threatening condition as part of their NHS care as she warned many parents have lost their child to the illness.

She said she had never heard of the condition before, had not been offered a test for herself during pregnancy, and had no idea the illness could be tested as she carried her child.

Group B streptococcus is a bacteria and a top cause of life-threatening infection in newborns, however most parents-to-be are only able to be tested via private healthcare.

Its presence is common during pregnancy and infrequently leads to problems, but in rare cases it can spread to a baby and leave them unwell. While the illness is not generally tested for, it can be discovered during tests conducted for different reasons through a vaginal swab or urine test.

An average of two babies a day develop the illness in the UK, and one baby dies every week from group B strep infection – and most of these cases could be preventable if the illness was diagnosed early on and treatment is speedy.

Symptoms in a baby include being floppy or responding differently, grunting while breathing, fast or slow breathing, a change in body temperature, changes to skin colour, and vomiting.

Ms Alonzo-Grazier’s call comes as new research finds around nine in 10 new or expectant mothers in the UK think testing for group B streptococcus should become routinely available via the NHS.

The study, by charity Group B Strep Support, discovered around eight in 10 mothers said they would want the NHS to test them for the condition – with seven in 10 of those saying they were not aware or had not been informed about the possibility of private testing.

Around six in 10 of the 1,000 new or expectant mothers polled across the UK were not confident in spotting signs of group B streptococcus infection in their child, with around three-quarters unaware the condition can cause meningitis or sepsis.

“Leon was born at 1 in the afternoon,” Ms Alonzo-Grazier says. “I had gestational diabetes, I was kept in for 24 hours to be monitored. By 11pm, he was making weird grunting noises – that was the first time I noticed something was up. He was taken to the neonatal unit.”

It was not until five days later that she and her husband found out he had group B streptococcus – with doctors initially thinking he had fluid on his lungs and then an unknown infection and treating it as sepsis.

“I panicked when they said sepsis,” she recalls. “I was researching ‘what is group B strep?’ This is my third child and I’d never heard of group B strep.”

Ms Alonzo-Grazier, who works in a secondary school, said her son spent seven days in a neonatal intensive care unit.

“I didn’t sleep very well,” she adds. “I kept checking my phone in case neonatal had called. It felt like I’d lost a limb. I was scared whether he would ever make it out of the hospital.”

She explained that six days after Leon was first discharged, he contracted group B streptococcus again and was readmitted to the hospital.

“It just felt like it was history repeating itself,” she adds. “It was surreal. I stayed in hospital with him those 12 days.”

Leon has now, fortunately, made a full recovery. He is 20 months old and is a “happy lively little boy”.

“There needs to be more awareness around group B strep,” Ms Alonzo-Grazier adds. “It frustrates me there isn’t. Women should know, especially given it can put your baby’s life at risk.”

The new research found just over two-thirds of those polled said they wanted more information about the condition which can cause serious infections such as pneumonia.

On average, one baby a week in the UK manages to recover from their group B strep infection but develops a life-changing disability in the process.

Campaigners say most high-income nations routinely offer antenatal testing to all pregnant women, including Germany, the US, Canada, Spain and France.

Jane Plumb, chief executive of Group B Strep Support, said: “While over 80 per cent of expectant mothers want to be tested, a significant majority are uninformed about their options. We at Group B Strep Support are calling for group B strep to be made a notifiable disease so robust national data can provide a full picture of the burden it causes, and we ask that national policymakers are open to new evidence when the GBS3 trial reports in 2025.

“Group B strep isn’t just a statistic; it’s the leading cause of severe infection in our newborns, and the lack of accessible testing is a preventable tragedy.”