INTUITION told little Tilly Collins’ parents that something was wrong as soon as she was born.
“She came out and she was grunting and just laid there on my chest,” says her mother, Joanne.
“There was no crying and little movement. She wouldn’t feed from me or from a bottle or syringe and that worried us.
“She was checked over and they said nothing was wrong with her, but I sensed that something wasn’t right.”
Hours passed with no improvement and eventually Joanne’s husband, Craig, told a nurse that the couple felt very strongly that there was a problem and Tilly was taken to special care to be checked over.
She was diagnosed with a tear in her lung and placed in an incubator and on a small dose of antibiotics. But after 24 hours, she had shown little improvement and a lumber punch revealed that she had a serious bacterial infection – group B Strep which had caused Tilly to get meningitis and sepsis.
Tilly was put in special care at the Royal Hampshire County Hospital in Winchester for two weeks. They were impressed by the level of care Tilly received, but it was a desperate time for her parents.
While Joanne says she didn’t allow herself to think about the worst, Craig researched the condition and found out just how serious it could be.
Almost one newborn baby a day in England, Wales and Northern Ireland suffers group B Strep infection, the leading cause of sepsis and meningitis in newborns. One in ten of those babies will die and a further one in five will suffer long-term physical or mental disabilities.
“It was awful and heartbreaking. Every day was an emotional rollercoaster. I couldn’t quite believe what was happening,” says Joanne, a nursery manager from Chandlers Ford.
“We didn’t know anything about group B Strep infection so we wondered how she had got meningitis and scepsis. Then I was given a leaflet and found out that it had come from me. I’d carried the bacteria and passed it onto her, which made me start feeling very guilty and wondering what I could have done to prevent it.”
Joanne is now involved in Group B Strep Support, which is raising awareness about the infection.
Carrying group B Strep bacteria during pregnancy, which approximately 25 per cent of women do, is recognised as a key risk factor for group B Strep infection in pregnancy, but as recent research has found, most women are not being told about it by their healthcare professional.
Tilly in special care
The infection in babies is up to 90 percent preventable when antibiotics are given in labour to women found to carry group B Strep bacteria at 35 to 37 weeks of pregnancy. This is standard practice in many countries, including Australia, Belgium, Canada, Chile, France, Germany, Italy, Hong Kong, Spain, Poland and the USA.
Countries which routinely offer antenatal testing for group B Strep have seen 71 to 86 per cent reductions in the incidence of these devastating infections in newborn babies, but in the UK the incidents rose by 46 percent between 2000 and 2010.
Joanne and Craig feel that the NHS should routinely test for group B Strep bacteria. It is estimated that the cost of providing the test on the NHS would be £11.38 each.
“We feel that tests should be carried out, especially when there is a higher risk of infection, such as when waters have broken more than 18 hours before birth,” says Craig.
The couple also feel it’s important that it’s also important that parents-to-be are educated about the infection, and informed that it can be tested for privately for £35.
“I would definitely paid to have the test if I’d known about it,” says Joanne.
“When you see the risk of not being able to bring your baby home, where so many babies have died, £35 is insignificant.”
Joanne says she focused on the routine of each day and every day, Tilly showed signs of improvement.
“I didn’t prepare for the worst,” she says.
“I kind of blanked out the seriousness of it. When my parents came to visit I said ‘I know it’s going to be difficult, but please don’t get upset in front of me’.
“It was a very difficult time for us and I was in no frame of mind to manage other people’s emotions too. I tried to be strong and put on a brave face.
“We never discussed the thought of not being able to bring her home, although we knew she was seriously ill. It wasn’t until afterwards, reading more about it and you hear the stories of babies not surviving and the long term effects, that it became much harder to deal with.”
Joanne and Craig were on tenterhooks for the first month after Tilly came home, watching her breathing and taking her temperature regularly.
They knew there was the risk of long term damage, in terms of developmental delay and learning difficulties. But so far, Tilly has hit all her milestones, and is a lively, bubbly eight-month-old who has recently started crawling, is fascinated by technology and happily babbles away to herself.
Tilly at home with her parents
“We are extremely lucky and are thankful everyday to have our precious little girl with us,” says Joanna.
“Bringing her home was the best day of our lives.”
“I know that screening and giving women antibiotics in labour when some of them might not actually need them would cost the NHS money but that seems insignificant compared to the cost of the two weeks she had in special care,” says Joanna, adding that the long term effects on her baby could have been devastating.
“I think it’s really important that parents to be know about group B Strep. Tilly had early onset but you can get late onset too, so many families may go home and the symptoms appear then.
“My message for other parents-to-be would be to be aware of group B Strep: read up on the infection, risk factors, signs and symptoms.
“It’s not about scaring people – knowing this could save a life.”
Most pregnant women who carry group B Streptococcus/GBS bacteria have healthy babies. However, it can be passed onto babies during childbirth, which can lead to serious and even life threatening complications.
It is estimated that around 1 in 2,000 babies born in the UK and Ireland develops early onset group B Strep infection – around 340 babies a year.
Group B Strep is one of many bacteria that can be present in our bodies and usually causes no harm.
It is estimated that one in five pregnant women in the UK carries the bacteria in their digestive system or vagina.
During labour, many babies come into contact with the bacteria and a small number become infected.
Early onset infection is developed within seven days of birth – usually within 12 hours. Symptoms include: • Being floppy and unresponsive • Grunting • Fast or slow heart rates • Fast or slow breathing • Irritability One in ten babies diagnosed with early onset group B Strep infection will die, while one in five who survive will be permanently affected. Problems include cerebral palsy, deafness, blindness and serious learning difficulties.
Late-onset group B Strep infection develops seven or more days after a baby is born and is not usually associated with pregnancy.
• For more information, visit Group B Strep Support – gbss.org.uk or call 01444 416176.