‘Living without Grace is hard. But, she is helping people, even now’ - Group B Strep Awareness Month

The first-born child of her besotted parents Shauna and Stephen, she had a ‘head of brown hair’ and made their ‘house a home.’

Heartbreakingly, at just 20 days old, little Grace passed away due to Group B Streptococcus (Strep), an infection which can be transferred from mother to baby, in certain conditions, during labour.

It causes a range of serious infections including sepsis, pneumonia and meningitis and on average, two babies each day in the UK develop a group B Strep infection. Each week, one baby dies from a group B Strep infection and another is left with a life-changing disability.

Grace should have turned 10 years old at the end of May and as a way of marking this, and as July is Group B Strep Awareness Month, her mother Shauna spoke to the ‘Journal’ to highlight the infection and inform other families of its risks.

“Grace was a normal pregnancy,” she said.

“At 36 weeks pregnant, I had a discharge and thought it might be my waters breaking. But, they did a high vaginal swab, which came back clear. I know now it’s normally a low vaginal swab that’s needed to detect Group B Strep.’

Shauna’s waters broke ‘as normal’ at full term, but a number of hours later she still wasn’t having contractions, so the decision was made to induce her. Before delivery, Shauna had a high maternal temperature and both this, and the length of time her waters had been broken before delivery, are two risk factors for Group B Strep. I didn’t know that at the time. I remember asking them if they were going to swab her, as two years previously my sister’s baby had been swabbed and tested for it, but it wasn’t done.”

Mother and baby were later discharged and family life with a new baby began. For the next two weeks, Grace was unsettled. She didn’t feed quite right and vomited. But Shauna was assured this was quite normal for a young baby. Two weeks later, the family’s joy turned into a nightmare, when little Grace became extremely unwell.

“My sister was looking after her, just to let me gets bits done around the house. Grace started to vomit green vomit and was very pale.”

Grace was taken to Altnagelvin, where she was incubated and stabilised, before being transferred to the Royal Victoria Hospital in Belfast.

Shauna told how the nurses and staff at the hospitals were ‘unbelievable’ during a heartbreaking time.

It was found that Grace was having seizures and had contracted Group B Strep meningitis. Scans confirmed she had no brain activity and her parents had to make the devastating and ‘horrendous’ decision to switch off her ventilator.

Shauna said she believes Grace had been trying to ‘fight the infection’ for the first two weeks of her life.

Since her death, Grace’s family have been involved in a campaign to raise awareness of Group B Strep infection and the call for all pregnant women in Northern Ireland to be tested. Women in Northern Ireland are not routinely tested for the infection, unlike countries like the United States, Canada, Germany, France and Spain. The test, which costs the NHS £11 and is normally taken during 35-37 weeks of pregnancy, is not widely available. It is available privately however, at around £35. See www.gbss.org.uk for more information on this.

If the infection is detected, a positive result means the women will be offered intravenous antibiotics when labour starts, up until the baby is born. These dramatically reduce the chance of the baby contracting Group B Strep.

Grace, who got involved in the campaign along with other ‘fantastic’ local women like Sinead McClafferty, said it is ‘frustrating,’ that 10 years after Grace’s death and following a large campaign around eight years ago, women and politicians are still making the same call for testing.

“It’s so frustrating seeing it happen to other babies. The information is there and campaigning is there. Sinead and the others did so much and you’d think something would have been done by now.

“I know there’s the worry about antibiotic over-exposure, but people get prophylactic antibiotics before surgery procedures. I know there are risks, but if it prevents this heartbreak for one family it’d be worth it.”

Following Grace’s death, Shauna had three other children and received IV antibiotics in each labour. Her daughter Ava was born in Australia, which offers routine testing. Shauna did not test positive for Group B Strep during this pregnancy. She delivered her son, John, in Altnagelvin. During Shauna’s third pregnancy, she experienced a huge bleed at 18 weeks and thought she was miscarrying. A swab was undertaken and Group B Strep was detected. Shauna again received antibiotics and delivered her son, Conor, healthy at Altnagelvin Hospital.

She continues to raise awareness of Group B Strep and to mark Grace’s 10th birthday, is undertaking the ‘Steps for Strep’ campaign which challenges people to walk 62,000 steps in two weeks - 1,000 steps for every baby who will develop the infection in July. The minimum steps must be reached between July 1 and 15.

Shauna takes comfort that in sharing her story, other families can be helped. “People have messaged me saying we helped them. Living without Grace is hard, but she is helping people, even now. With Group B Strep, knowledge is key. I’d just ask women to educate themselves, find out all about it and ask about it. The test is there if you’re concerned.”

Grace’s memory, legacy and love continue to remain in the lives and heart of her parents and siblings. “The children know all about her. We talk about her and they know she’s in Heaven. She’s very much part of our home and I really do know she keeps an eye on all of us.”

To find out more about Group B Strep, including the risks and test, see www.gbss.org.uk.