Maternity Units: Bereavement Care

Jim Shannon Excerpts

Monday 2nd November 2015 Commons Chamber

[Will Quince (Colchester) (Con)]

I am delighted to have secured this debate on bereavement care in maternity units, which stems from my own experience and from further research. I should stress that I am no expert in maternity or bereavement, but I speak from personal experience. In May 2014, my wife had her 20-week pregnancy scan, at which point an abnormality was identified. Further tests led to a diagnosis of Edwards syndrome. I do not want to go into the detail of my son’s condition, but Edwards syndrome is described as being “not compatible with life”, so we were well aware of the likely outcome. However, our son was clearly a fighter and he survived full term, to 41 weeks, but sadly, in October last year, he was stillborn.

As hard as it is to tell my story, it sets the scene for this debate and will, I hope, give the House a small insight into the experience of the parents of the 5,000 babies who are either stillborn or die within seven days of birth every year in England. It is difficult at the best of times to talk about death, particularly the death of children or babies. We all hope it will never happen to us. But there must be provision, facilities and trained staff ready, willing and able to assist families who find themselves in this awful position.

[Jim Shannon (Strangford) (DUP)]

I am pleased to be here to support the hon. Gentleman this evening. I realise that he is telling us a very personal story. The figures indicate that 11 babies are stillborn in the UK every day, which makes stillbirth 15 times more common than cot death. Does he agree that we need not only bereavement centres in hospitals but also the presence of someone from the Church to give spiritual, emotional and physical help at that time?

[Will Quince]

The hon. Gentleman makes a good point, and I thank him for his intervention. The chaplain at the hospital certainly gave us a huge amount of solace. They provide a really important service.

For my wife and I, our care was absolutely fantastic. I cannot praise highly enough the staff at Colchester general hospital who cared for us when we needed it most. The very positive experience that my wife and I had at Colchester represents the model I would like to see rolled out across the country. As the chance of our son being born alive was poor, we were booked into the Rosemary suite, a specialist bereavement suite at the hospital. Crucially, it was far enough away from the hustle and bustle of the maternity unit, with a room that the dad can also stay in and a lounge and kitchenette. It is as near as you can get to a home from home.

The suite gave me and my wife the chance mentally to prepare for what was to come. Importantly, it was away from the noise of crying babies and happy parents and families. It was a place to prepare but also a place to grieve in private, and somewhere that we could be with our son. Importantly, the Rosemary suite also had a cool cot, which is a piece of medical equipment that acts like a refrigerated cradle, so that babies who have died do not need to be taken straight to the mortuary. That means that parents and family members can spend as much time as they want with their baby. Sister Liz Barnes, the gynaecology nurse counsellor, gave us a huge amount of emotional support, both before and after the event. I cannot tell you what a comfort it was to have Liz with us, speaking to us and guiding us through the next steps and, of course, the funeral arrangements.

Having gone through that experience, I had assumed that every maternity unit in this country had a bereavement suite, but sadly that is far from the truth. I have heard shocking stories of a lack of compassion and care shown to parents of stillborn babies in maternity units. An article published in BMJ Open in 2013 on bereaved parents’ experience of stillbirth highlighted some of the problems in care for parents in some of our hospitals. The report carried interviews with bereaved parents and contained some very distressing responses. One mother said:

“They only left him with me for about an hour. Then they just took him away. I was begging them not to take my baby”.

Others talked of a poor experience with hospital staff. One said:

“I thought these people”—

midwives and doctors—

“knew what they were doing. I wish I hadn’t thought that now.”

Another claimed:

“The delivery was just awful from start to finish. They almost treated me like ‘the woman with the dead baby’. There was no sympathy. When I asked to see a doctor, this particular doctor came in and said, ‘We’re very busy.’ And his exact words, I’ll never forget them, “Well, with all due respect, your baby’s dead already’. Which was just the most awful thing you could say.”

Some highlighted a distressing rush to decision making. One mother said:

“I wish someone had said to me in those first few hours, ‘Even if you don’t want to see her now, you can see her in an hour or two. Or in a day or so’. I was left to believe that because I wasn’t ready to see her, that was final.”

Some of these examples are really hard to listen to, but there are also some very encouraging stories within the report. Some mothers spoke of the “very, very caring staff”. Another very movingly said:

“Even though she wasn’t breathing and she didn’t open her eyes, she”—

the midwife—

“still said you’ve got a beautiful baby girl. It just meant the world.”

I will remember until the day I die the midwife who helped me dress our son after he had sadly passed away, and she said, “You have a beautiful baby”. I will never forget that.

The report concludes that in these tragic situations, clinicians and hospital staff

“only have one chance to get it right”.

It also stated that the experience of stillbirth can be influenced as much by staff attitude and caring behaviours as by high-quality clinical procedures. Last month, a study said that the UK provides the best end-of life care in the world, but if we want to maintain this level, we should not forget end-of-life care for stillborn babies and those with very short lives. The impact of stillbirth and post-natal death on parents should not be understated.

As it stands, maternity bereavement care in English hospitals is patchy. A major survey by the bereavement charity, Sands, from 2010 highlighted that nearly half of the maternity units in England did not have a dedicated room on the labour ward for mothers whose baby has died. That is important because these rooms are where they cannot hear other babies, jubilant parents and visiting families. It is absolutely vital that more hospitals recognise the importance of bereavement suites and their role in easing the pain and loss of bereaved families. These bereavement suites should be separate from the main maternity unit.

Even though I was absolutely aware of the likely outcome when I entered the Rosemary suite in October last year, nothing can prepare you for the shock and the numbness that comes from seeing your wife give birth to a lifeless baby. The precious hours we spent in what I can describe only as beautiful silence afterwards helped me and my wife come to terms with what had just happened. No parent should have to face being taken to a room in a maternity ward of crying babies when you have just gone through a stillbirth.

Many charities, such as Sands, Cruse and The Compassionate Friends do a fantastic job in raising awareness of the support that should be provided to bereaved parents. Many of the bereavement suites in hospitals are actually partially funded and provided by the fantastic work of these charities. I know many bereaved parents, us included, raise money after their loss, knowing how valuable these suites are. I know there has been some progress made in this area. In 2013-14, the Government invested £35 million in new maternity equipment and facilities. That helped to fund nearly 20 new bereavement suites and areas to support bereaved families. There is also a growing recognition of the role of bereavement-trained midwives, and that is really important in helping bereaved families after stillbirth or infant death. In February 2014, the NHS published a report on the support available for loss in early and late pregnancy, which stated:

“There needs to be better recognition of the bereavement midwife role. Generally, these roles are not part of the original establishment. Trusts are beginning to recognise the value in having these specialised posts and they are becoming more commonplace.”

It is great to see trusts increasingly recognise the fantastic work that these specialist bereavement suites and the staff can play in these tragic circumstances. I know that my family were very grateful for the fantastic support that we received.