Reporting by Sharon Donaldson
A Dundee mother has spoken of the heartbreak she carries with her every day following the loss of her first child.
Nadia Wright’s son Brandon died 13 years ago after becoming infected with Group B strep.
As part of National Baby Loss Awareness Week, she wants to highlight the devastating effect that losing a baby can have on a family and how they have coped since.
Brandon was born at Ninewells hospital in Dundee in 2006. At first he appeared to be completely healthy. But after an hour Ms Wright noticed his breathing seemed laboured and he was making a strange grunting noise.
At three hours old, Brandon was taken to the special care unit where he was put on a ventilator, but his condition deteriorated very fast. He only lived for 17 hours.
Ms Wright said: ”We were waiting for this ambulance and he literally just got worse and worse, to the point where the doctor said ‘he won’t make it to Yorkhill’, we just agreed to stay in Dundee and maybe an hour later he had passed away really suddenly.
“It was shock, you don’t think that you’re going to go into hospital and have your baby and leave without them, it was just horrendous.”
“Brandon’s death greatly affected us all. Myself and my partner really struggled to come to terms with what had happened.
“We were both very anxious during my pregnancy with our second son and later our daughter.
“I’d urge any mother or father to be, or just anyone who knows of someone who is pregnant to encourage them to test themselves for group B Strep privately.
“I’ve spoken to many people over the years and the vast majority had never heard of group B Strep before I had mentioned it to them.
“Even 13 years after my own experience there has been little change and that is extremely sad.”
Group B strep is the UK’s most common cause of severe infection in newborn babies, causing sepsis, pneumonia, and meningitis.
The bacteria may be passed unknowingly from a mother to her baby around birth. Each week in the UK one baby dies and another is left with long-term disabilities.
The UK does not currently routinely test pregnant women for group B strep, unlike many other developed countries, including the United States, Canada, Germany, France and Spain.
Many pregnant women aren’t even informed about the risk, despite it being a guideline from the Royal College of Obstetricians and Gynaecologists that every pregnant woman should receive a leaflet about it.
This would help pregnant women make an informed decision about whether they want to get tested or not, which can be done privately for around £35.
In 2018 there were 190 stillbirths and 103 neonatal deaths according to the National Records of Scotland.
But more than eight out of ten NHS commissioners across the UK do not provide specialist therapies for parents who experience a psychiatric illness after pregnancy loss or the death of their baby, according to a report published today by the Baby Loss Awareness Week Alliance.
The report – ‘Out of Sight, Out of Mind: Bereaved parents falling through the gaps in mental health care’ reveals that 60% of bereaved parents surveyed felt they needed specialist psychological support for their mental health, but were not able to access it on the NHS.
And those bereaved parents who were able to get psychological support, often had to attend clinics where they were surrounded by families with live babies.
Overall, parents reported waiting too long for support, particularly when referred by their GP and a lack of accessible NHS services led some parents to seek private care, which not everyone can afford.
The Baby Loss Awareness Week Alliance of 90 charities is now urging Government and the NHS to ensure that anyone who needs specialist psychological support following pregnancy loss or the death of a baby can access it, free on the NHS, wherever and whenever they need it.
Dr Clea Harmer, chief executive of Sands (stillbirth and neonatal death charity), said: “Grief is a natural response to the devastating experience of losing your pregnancy or the death of your baby, and charities like Sands are here to offer support.
“However, many bereaved parents do go on to experience psychiatric illnesses that require specialist mental health services.
“Recently there has been strong political support for improving care for pregnant women and their families.
“Action now needs to be taken to ensure that improvements to maternity, perinatal and mental health services do not exclude those parents who’ve experienced pregnancy or baby loss and need access to good quality psychological support on the NHS.
“Bereaved parents are telling us they struggle to access psychological support – that waiting lists are too long and services lack the specialist skills and knowledge to support them.
“This is clearly unfair but it is not too late; decisive action could have a huge positive impact for those parents who experience a mental health problem following pregnancy or baby loss.
“We believe that Governments and the NHS can make a real difference for bereaved parents across the UK, if they give specific attention to those who have experienced pregnancy or baby loss when planning, funding and delivering psychological support services.”
A Scottish Government spokesperson said: “Pregnancy and baby loss are tragedies for everyone affected and we expect bereavement support to be available to all who would benefit from it.
“We want all families to have access to perinatal mental health services which is why we are investing £50m in perinatal and infant mental health services over four years.
“We also established a Programme Board to provide strategic leadership of the delivery improved perinatal mental health services.
“This will include establishing improved provision at national, regional and local level and will consider mental health support for miscarriage and baby loss as part of its ongoing work.
“All pregnant women in Scotland receive the Ready Steady Baby guide which includes information on Group B strep and we have also funded Group B Strep Support to supply information leaflets to health boards across Scotland.
“Pregnant women should contact their midwife or maternity unit if they have any concerns about Group B Strep.”