'Our baby died just hours before she was born'Group B Streptococcus, (GBS) is not a term that is familiar to many or any of us, writes Kathy Donaghy, which is why the Black family are trying to raise awareness of it
For Denise Black, it had been the perfect pregnancy. She and her husband Nigel couldn't wait to be parents - their first child was due in August 2013.
When she felt the first stirrings of what she thought were labour pains a few days before her due date, Denise called her husband Nigel and they made the journey from their home in Swords, Co Dublin to the National Maternity Hospital in Holles Street. They were excited to be on the road to meeting their longed for baby, the first grandchild on Denise's side of the family.
On arrival at the hospital Denise was seen by a midwife who couldn't find their baby's heartbeat. They were told not to worry. But a second examination by a doctor failed to detect it too. Two ultrasound scans showed their precious baby's heart had stopped beating.
Their baby daughter Sophie was born on August 12 at 3pm. Nigel recalls thinking how perfect she was. She had died only hours before her birth.
A post mortem showed that Sophie had died of Group B Streptococcus commonly known as Group B Strep (GBS). It's a common bacterium - around one in four women in Ireland carry it and most haven't a clue that they're carrying it. The risk of it being passed from a mother to a baby is highest during labour or if the mother develops an infection around the time of childbirth.
A baby can be at a greater risk of developing Group B Strep infection if the baby is born or the waters break prematurely - before 37 weeks of pregnancy and more than 18 hours have passed between the mother's waters breaking and her baby being born.
But it was different for the Blacks. Denise was 39 weeks pregnant and her waters were intact. She had no infections. The post mortem results showed up GBS in Sophie's ear and in her brain. The Blacks don't know how or when Sophie's infection occurred. What they do know is that a simple swab test would have shown up whether Denise was carrying the bacterium and they want to see other families informed about GBS when they go to their first ante-natal hospital appointment.
"When you go into hospital there are so many things you are informed about. There are so many rules about what you can eat and what you can drink but nobody tells you about Group B Strep," says Denise.
The Blacks say they cannot understand why something as important as GBS isn't discussed as part of routine ante-natal care and believe everyone should be informed about it and offered the chance to be tested for it.
Just over one year after their devastating loss, Denise and Nigel welcomed their daughter Chloe into the world. Their second little girl was due in September 2014 but she arrived two weeks early sharing the month of her birth with her big sister Sophie.
On Denise's second pregnancy, she was tested for GBS at 26 weeks and again at 36 weeks and her pregnancy was closely monitored. Chloe is two and a half now and her parents say she's full of beans and talks about her big sister all the time.
Like the situation in Ireland, pregnant women in Britain are not routinely offered testing for group B Strep, however, a dedicated organisation to support families affected in any way by GBS was set up over two decades ago in Britain when Jane Plumb lost her middle child Theo to GBS infection.According to Jane, on average in the UK one newborn baby a day develops a group B Strep infection and one baby a week either dies from GBS infection or survives with long-term disabilities - physical or mental or both.
But despite the stark statistics, Jane says unless women know about GBS they can't ask for the test and it is something that women must be told about so they can make informed choices about it.
"In the UK, GBS infections in babies are increasing. But unlike so many developed countries including the US, France, Germany, Canada, Poland and Switzerland, it's not in official guidelines to tell pregnant women about GBS nor is it standard practice to offer them a test, which only costs a few pounds. Instead, the UK adopts a risk-based approach that was rejected by the US in 2002. This looks at things like a woman's previous pregnancies," says Jane.
In relation to testing for GBS, Jane explains that it's very non-invasive and can be done by the woman herself doing a vaginal and rectal swab when she is between 35 to 37 weeks pregnant. If treatment is necessary, IV antibiotics are administered during labour.
According to the HSE, there is currently no policy in relation to GBS. However national guidelines are being developed by the Institute of Obstetricians and Gynaecologists, according to Professor Louise Kenny, Consultant Obstetrician and Gynaecologist at Cork University Maternity Hospital.
Prof Kenny says we don't currently screen for GBS at the minute. However she says the issue is a complicated one because so many women carry the bacterium which is harmless most of the time. She says a national screening programme would mean screening every pregnant woman and treating them with antibiotics if they tested positive for GBS.
Prof Kenny points out that the risks associated with overuse of antibiotics are now well known and this is a significant concern. She says there is also a risk of women, who may not know they are allergic to penicillin, having a serious allergic reaction to the drugs.
"We don't know if screening and treating is the right thing to do yet. We need to keep it under constant review and look at the research as it becomes available. At the minute it's being looked at and guidelines are under development. We are very cognisant of this and we do care about this passionately," she says.
Whether a test would have saved Sophie's life, Nigel and Denise Black will never know but they want to ensure that at the very least people have heard of GBS and can ask for a test if they want one. Sophie would have been turning four this summer had she lived and the couple believe it's a fitting tribute to her memory that they raise awareness of GBS. "How many babies could it save if people knew," asks Nigel.
* INM has a dedicated section independent.ie/babyloss where parents of all ages can share their stories of miscarriage, stillbirth and neonatal death. The section will serve as a
testament to the women and men who share their stories, a memorial for the babies lost and as a resource for other people who have gone through or are going through the experience.
Your stories can be anonymous or on the record and nothing will be published in any format without prior consultation with you. If you would like to be part of this and tell your story, email Yvonne Hogan at yhogan@ independent.ie
Health & Living