Stillbirths - a CNCI special report.

STILLBIRTHS: “IT IS A LIFE SENTENCE: SOMETHING YOU NEVER GET OVER”

In spite of advances in medical science and healthcare training, there are still thousands of stillbirths in the UK each year. In this special report, CNCI looks at the issue, the work of the charity SANDS and speaks to two women whose stories of stillbirths 30 years apart show how the NHS response is changing.

Few incidents are as distressing as a stillbirth.

The sense of loss, emptiness and disappointment that follows anticipation and euphoria is vast, not just for the woman but for the whole family with fathers often finding the shock hardest to bear.

The bitter disappointment, sense of failure and trauma is devastating.

As one mother recalls in this special Clinical Negligence and Catastrophic Injury (CNCI) report: “A stillbirth is something you never get over. You just learn to live with it. It is a life sentence.”

The numbers of stillbirths in England and Wales has fallen gradually during the last 20 years and most recent figures from the Office for National Statistics (ONS) show a 1.1 per cent decline to 3,112 in 2016 from 3, 147 the previous year.

The figures show that in 2016, the England and Wales stillbirth rate fell to 4.4 per cent of all 1,000 births. This is the lowest stillbirth rate since 1992 when it was 4.3 per cent and represents a general downward trend during the last 10 years with an overall 19 per cent decrease since 2006.

But the figures also show that the rates of stillbirths can fluctuate. While, in England, the 2016 stillbirth rate was 4.3 per 1,000 total births, down from 4.4 in 2015, in Wales it was 5.0 per 1,000 total births, a slight rise from 4.7 in 2015.

However, a separate study in the medical journal, The Lancet, in 2016 found that Poland, Croatia and Estonia have lower stillbirths rates than the UK. Even though the average number of UK stillbirths has declined by 1.8 per cent since 2000, falls of 3.5 per cent have been achieved in Poland and 6.8 per cent in the Netherlands.

The World Health Organisation (WHO) defines stillbirth as a baby’s death after 28 weeks of pregnancy. In the UK, if a baby dies before 24 completed weeks of pregnancy, it known as a miscarriage or late foetal loss.

Other factors that may play a role in the numbers of UK stillbirths are a shortage of midwives and growing numbers of births to older women who are prone to more complications.

The Royal College of Midwives (RCM) estimated in 2017 that there is a ‘national shortage’ of 3,500 midwives with overtime shifts and temporary staff being used to fill the gap.

Meanwhile, the number of women aged between 35 and 39 giving birth rose by 3.8 per cent in 2016, the highest level recorded since records started in 1938. The number of women aged more than 40 giving birth also rose by 1.7 per cent.

The ONS figures show that there have been more than 129,000 births annually to women in these age groups during the last 13 years, the first time since the 1940s.

UK stillbirth and neonatal charity, Sands, which says that 15 babies die before, during or soon after birth every day in the UK, provides free help through a national helpline, forum and network of support groups.

The charity also trains thousands of midwives, doctors and other professionals to provide the care and support parents need when their baby has died and is pioneering a National Bereavement Care Pathway to make providing excellent bereavement care a priority for all hospitals.

A CNCI partner at Harrowells Solicitors, Kim Daniells, says: “The factors involved in stillbirth are complex. Efforts to reduce their incidence have not always been effective and sadly, in some cases, medical and care failings are still implicated.

“We recognise SANDS' very valuable campaigning work to raise awareness and that the charity provides compassionate support to grieving families. As the following case studies show, it is clear that the NHS response to families at such a time of tragic loss has improved over recent years.

“We hope that with advances in medical science and improvements in maternity care, the stillbirth rate will see a sustained reduction.”

“I, and thousands of others, should have had a better service but we cannot blame the hospital staff. It was how they were taught”

Kim Reilly, who lives in York and runs stillbirth and neonatal charity, SANDS, at York Hospital, suffered the stillbirth of a daughter almost 40 years ago.

She was only 18, married, and working in a shop when she was admitted to Preston Royal Infirmary, Lancashire, in July 1979 having been pregnant for 41 weeks and five days – almost two weeks more than full term.

Kim says: “I went in thinking was going to have a baby but when they were doing the routine checks the nurse called to me: ‘your baby’s dead, there’s no heartbeat.’

“I was absolutely stunned and thought this was a very cruel way to tell me. I wondered how they knew. Once they realised that the baby, who I was going to call Nicole, had died, I was on my own.

“They were very plain speaking and told me I’d have to go through the birth alone and to get on with it. The fear of being there and giving birth to a dead baby on my own was horrendous. Nowadays lots of midwives comfort you and guide you through the process. I recall wondering then why these women had gone into maternity work.

“There was no comfort at all. I gave birth and wanted to peep and see what she looked like but they whisked her away without me seeing, or holding, her. I never saw her again. In those days they felt it was best as part of the healing process: you did not get to see your own child.

Today Kim believes her baby probably died due to placental abruption. Being more than a week overdue was likely to have placed a strain on the placenta – the baby’s life source – and she almost certainly died as a result. “When I was first in hospital she kicked around a lot and I now think that was when she was dying.”

After being discharged from hospital, Kim, who was severely traumatised, went back home to her husband to recover in her own surroundings but worse was to come.             

She says: “I returned to the hospital six weeks later for a post-natal check up. I asked about Nicole as I felt ready to bury her but they said that they had already buried her at the foot of an adult because it was the cheapest way for the hospital to do it.

“Various thoughts raced through my head including that I had lost my baby and the hospital had buried her in the cheapest way without even involving her parents. I also wondered if the family of the adult knew that there was also a baby in the grave.”

Kim says that she walked away from the hospital feeling “absolutely lost”. “I was a teenager. I did not know how to deal with it. I thought that this could not possibly have happened in 1979. It sounded more like behaviour from the 1940s or 1950s.

“I got the bus and sat there not wanting eye contact with other passengers. The next thing was that I was told I could not have maternity leave as I had not had a baby.

“I had also received a £25 a week Government maternity grant to buy baby things. I was told I had to pay it back weekly and so, in order to afford this, I returned to work as soon as I could and probably before I was mentally or physically well enough.

“I felt that the world was ganging up on me. I just had to get on with it and became a tough person to be able to deal with it.”

In 1998 Kim decided to find out what happened to Nicole. “A stillbirth is something you never get over,” she says. “You just learn to live with it. It is a life sentence. I just kept it at the back of my mind.

“I did not have any information on the baby so decided to ask my GP for the details, such as her head circumference, length and so on. When the information came through, there was a page missing and I called my doctor and asked about this.

“He said that the missing page covered the burial. I asked him if he could get it and, when he did, it turned out that Nicole was not buried at the feet of an adult but in a communal baby grave plot. The hospital had lied to me about how and where my baby was buried.”

The trauma sent Kim back to Preston to locate her. “I found where she was and remember collapsing in a heap thinking ‘Oh my God. I cannot believe this’. There were 56 other babies in the communal grave. I became concerned that, like me, other parents may not know where their child was buried. I got in touch with the Lancashire Evening Post who ran a story explaining how I had found my baby and about the communal grave.

“This turned into a campaign which ran for a year and resulted in 2,500 babies being re-united with their parents who had not known where they were buried.  We had a memorial day with a priest to do a blessing and cemetery staff attending. Amazingly, more parents found babies that day so some good came out of it.”

“Finding Nicole brought back all the stress. That’s when I got in touch with SANDS in York, around the time it started.

“I went to the SANDS meeting feeling foolish because it was so many years after my stillbirth but my distress had erupted again. All these years later, I am now running the group. Most people do not want to belong to SANDS but when you do, you really belong. We are a very close-knit organisation.

“Part of working for SANDS is that I know that mums need the sort of help that I did not receive. They also trust me because they know I’ve been through the same trauma. I want to make sure that they do not suffer like I did. Many SANDS volunteers have suffered stillbirths. Today’s midwives are also much better than I experienced.

“I, and other women, should have had a better service but we cannot blame the hospital staff. It was how they were taught. They thought they were doing the right thing.”

The postscript to Kim’s story is that nine years after Nicole’s stillbirth, she had a daughter, Kristie. “Bizarrely, Nicole’s birthday was July 7 and Kristie was born on July 6 1988 so I was in hospital during the same week which I found very hard.”

Now Kristie has her own daughter, Freya Nicole, named after Kim’s eldest daughter; so Kim is a grandmother and hundreds of women also benefit through her voluntary work with SANDS.

“Seeing Alexis dressed in nice clothes after she had died, helped me come to terms with what had happened”

Natasha Limbert, who is registered disabled, did not realise she was pregnant until she gave birth to baby Alexis in 2015.

“As I had been told seven times by medical professionals that I was not pregnant, it was the last thing on my mind,” she says. “I’d had several GP appointments and was told I had gastroenteritis or irritable bowel syndrome.”

Natasha, 25, gave birth to Alexis in the downstairs bathroom at her family home in Tadcaster Road, York, on December 8. “I was very shocked. It was like some weird dream, ” she recalls.

On Christmas Eve, Alexis was taken ill. “I’d put her back to sleep at 3am. She was very restless and woke up around 6am, grey, sweaty and unresponsive. She was clearly very ill and I called 999.

“I took Alexis from her Moses basket and took her downstairs where my mum, Sabine, who used to be a nurse, gave her CPR.

“We got to hospital and I was put in a family room while they took Alexis for resuscitation. Then, at 7.35am, a student nurse came in and said ‘I’m really sorry Alexis has not made it.’

“All sorts of thoughts rushed through my mind. Why had this happened to my daughter and I? It was every parent’s worst nightmare come true. Alexis was only 16 days old.

“I broke down. Five minutes or so later my mum, brother Ben and his friend Ryan, arrived and I told them what had happened. My elder sister, Mara, had stayed at home with my four-year-old daughter Savannah.”

Eventually, nurses brought Alexis into a side room at the hospital in a Moses basked, dressed in a long-sleeve baby grow, a hat and covered with a blanket. The basket was placed on a bed so Natasha and her family could spend time with her.

Natasha, who has split with Alexis’ father, says: “Seeing Alexis dressed in nice clothes after she had died did help me come to terms with what had happened but it also made it more real and harder to deal with.

“My heart felt as if it had broken. I felt physically sick as the emotional pain turned into physical pain. After 20 minutes with her, we were told that someone else needed the room and that she had to be taken to the mortuary.

“The nurses were lovely and tried to comfort me which helped to some extent but, as it was Christmas, there was only a skeleton staff. We felt that we were rushed, so it was not as much help as it might have been.

“However, we took photos of Alexis on my brother's phone. I’ve kept these so I can look back and remember what she looked like.”

After Christmas, Alexis was taken to Newcastle for a postmortem, which determined her cause of death as viral and bacterial bronchiolitis and bronchopneumonia, which subsequently led to heart and lung failure.

Alexis was meant to be baptised at York Hospital but, due to the shortage of staff, this happened at the funeral home where the funeral director also dealt with the documentation for the release of the body. The funeral was at St Oswald’s Church, Fulford Road, on January 15 2016.

Natasha recalls: “I was struggling a lot mentally and the health visitor for my elder daughter fixed up a meeting with Kim Reilly, who jointly runs the York SANDS group. She came to my house, as a visit to York Hospital would have brought back all the memories.

“One of the first things Kim told me was her own story and hearing about her own experience stopped me feeling so alone. She had felt the same pain and I knew I was with someone who really understood and was not judgmental. I still meet Kim and other members of the ‘SANDS family’ regularly.”

Natasha was also later introduced to York Hospital’s bereavement nurse, Bev Shelley, who runs the SANDS group alongside Kim.

She says: “Bev has been amazing. If there is anything you need, she is there to help. This has stopped me feeling so alone. Now me, my mum and other members of the family have become SANDS Volunteers too, helping people who have suffered miscarriages, stillbirth or neonatal death.

”We meet people regularly, for a coffee, or in a local park, just for a chat. Sometimes you need just to meet with people who will not judge you in order to feel better. We have had people who lost children 30 years ago wanting to meet us fort a chat.

“Losing as child is something you never get over. You come to live a new type of normal and it is important not to feel so alone.”