A simple test could save the lives of more babies like Isla
PUBLISHED: 09:33 23 August 2015 | UPDATED: 09:33 23 August 2015
Archant Norfolk © 2015
Isla Gilson was just hours old when an unexpected illness almost ended her life.
As she lay beside her mother in the neonatal ward at the James Paget University Hospital, in Gorleston, she began showing worrying signs of distress.
Isla was rushed off for three days of emergency care to treat a condition no one in her family had previously heard of.
She was one of hundreds of babies born in the UK each year infected with group B streptococcal (GBS) – a usually harmless bacteria carried by around a fifth of pregnant women but which can become life-threatening if exposed to infants around the time of labour.
And with dozens of infected babies dying each year, and more suffering long-term mental and physical disabilities, Isla’s parents are backing a simple solution to stem the problem.
Tests to detect, and then prevent, GBS in pregnant women are offered routinely in many other countries – but not the UK.
Melanie and Richard Gilson, from Gorleston, told their story to raise awareness of the Group B Strep Support group and its calls for government to introduce routine testing.
And they have been backed by Suffolk MP Dan Poulter, a former junior health minister.
But the government says its current approach is appropriate to ensure the safety of babies and instead offers it only to pregnant women deemed at risk.
If GBS reaches a baby’s bloodstream or lungs it can cause septicaemia or pneumonia, either of which can be fatal and are difficult to treat.
For Isla, the infection had resulted in meningitis, a potentially deadly disease that can also cause lifelong disabilities including blindness, deafness and learning impairments.
“I was numbed with fear,” said Mrs Gilson, who was 23 when it happened in August 2012.
“I had been expecting a perfectly healthy baby and then you hear the word meningitis and instantly think of death.”
Despite doctors initially warning of the worst, Isla managed to pull through thanks to a combination of antibiotics and 24 hour care.
She was released from the neo-natal intensive care ward and after three weeks under observation headed home with her thankful parents.
“It was a miracle recovery,” said her mum. “She went from being given 24 hours to live, to responding really well in just a day.”
Almost three years on, Isla has made a full recovery and shows no signs of her early medical crisis, while the couple are expecting their second child.
Around 400 babies a year develop GBS and Mrs Gilson says it is shocking that more is not done to educate parents and health professionals about its dangers.
“At the time it was extremely frustrating that no one appeared to be listening to me when I was speaking to the midwives,” she said.
“Parents don’t imagine in their wildest dreams that something like this could happen. And as good as the doctors were in neo-natal, even they had only limited knowledge – there’s just not enough information.
“There are so many leaflets out there when you visit ante-natal clinics, but not once did I see a leaflet on GBS.”
She contacted the Group B Strep Support Group over Facebook after her family’s infection scare was over and wanted to share their experiences to help others.
The “gold standard” enriched culture medium (ECM) tests are intended to be available for healthcare professionals to use on high risk mothers, though the support group claims this test is not in widespread use. If a test proves positive it means the mother can be given antibiotics during labour, reducing the chance of infection passing to the baby.
“My advice to pregnant women would be to make sure you get the test,” Mrs Gilson said.
Do you have a story for our investigations unit? Email firstname.lastname@example.org.