Baby Loss Awareness Week

Paul Masterton Excerpts

Tuesday 10th October 2017 Commons Chamber

[Paul Masterton (East Renfrewshire) (Con)]

Let me start by saying how grateful I am to everybody who secured the extension of today’s business so that we have the opportunity to pay tribute to the families who have suffered the unimaginable loss of a child and to the professionals who provide irreplaceable care and support throughout a journey that no parent ever wants to take, and, in Baby Loss Awareness Week, to break the silence for bereaved parents, as the strapline for this year’s campaign says.

I also pay tribute to the APPG and to my hon. Friends the Members for Banbury (Victoria Prentis), for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince), and to other Members from across the House, including the hon. Member for North Ayrshire and Arran (Patricia Gibson), who have spoken with such courage, dignity, passion and determination, enabling us to deal with this issue in a very open and honest way and to really move things forward. The hon. Lady was right to say that if we do not talk about things, nothing ever happens, and I commend everybody for telling their stories.

I want to tell two stories today, one of which I told in my debate in Westminster Hall before the recess, and which focused on bereavement support for employees. It is about a young guy in the west of Scotland, who was recently married and looking forward to becoming a dad for the first time, but whose son died at three days old. He received a phone call from his employer the day after his child’s death to say that because his son was dead and there was no baby, there was an expectation that he did not need the remainder of his parental leave and was therefore expected to come back to work the next day. The hon. Member for Belfast South (Emma Little Pengelly) is so right that there is an assumption that people are kind and decent and deal with things compassionately, but the truth in too many cases is that that is not the case.

The second story I want to talk about is about a family in my constituency, and it means a lot to me because it is the story of my office manager, whose daughter Rebecca died of TB meningitis. She had spent the last three months of her life in the Institute of Neurosciences in Glasgow’s children’s hospital. After several failed operations on her brain, her parents were told that there was no hope and that their daughter would die—their daughter, who had previously been fit and well and full of life, would die of a disease not usually associated with a first world, developed country. For the last three weeks of her life, she was transferred to Robin House, which is a most incredible children’s hospice run by Children’s Hospices Across Scotland in Balloch, near Loch Lomond.

The staff of Robin House gave Rebecca, her parents and the rest of her family a week devoted to giving her what I believe is called a “good death”. I am not sure there is ever such a thing, but in these circumstances perhaps that is the right term. It was a week where nothing else mattered, where the tasks that made an impossible situation in the hospital worse, like having to cook, do the laundry, travel, find a car parking space and look after other children, were all entirely dealt with. Rebecca died on 2 December 2009 in the arms of her parents, in a double bed that had been installed in her room from another part of the hospice, because no task was impossible for the staff of Robin House. Indeed, their support for Rebecca’s family continues several years on.

It is important to recognise that for the charities across the UK no task is impossible for the babies, children and parents they look after—from Bliss and its vision to give every baby born prematurely and sick in the UK the best chance of survival and quality of life, to Sands, which offers support to anyone affected by the death of a baby, the Miscarriage Association and its work offering support to anyone affected by miscarriage, and Together for Short Lives, whose mission is to secure the best quality of life and the best end of life for children who have short lives. In parents’ hours of need, absolutely nothing is insurmountable for both the paid staff and the volunteers in these organisations.

As we have heard, however, experiences outside the specialist palliative care environment can vary wildly. Hospital facilities do not always lend themselves well to the purpose of grieving. Not all health boards have dedicated bereavement rooms. They do not all have dedicated staff available. They do not all have rooms where parents can leave the noise and “life” of the hospital environment, which can make things so much harder and painful because it is so impersonal and sterile. Not all hospitals provide night-time accommodation for parents. Rebecca’s mum regularly slept in hospital coffee rooms overnight simply because there were not the facilities on the ward for her.

After death, when families are left devastated—some of them may have lost or given up their job and devoted themselves to being the sole carers for a sick child for many months or possibly years—the support we as a society give them to grieve can make the difference between whether they are able to rebuild their lives or not. Someone said to me that when your child dies you are shattered and, like a smashed vase, you can put the pieces back together but you are never the same as you once were; you are never truly whole again. You may find a way to function in society, but you are not coping; you are never coping. The grief can come on almost randomly and indiscriminately and it can be overwhelming. We must acknowledge the fact that the psychological consequences of grieving for a child are lifelong. It is not something that will ever leave you.

I am talking today not with a list of statistics or data because this is not a debate for pie charts or graphs. It is more about trying to reinforce the message of Baby Loss Awareness Week, to break the silence for bereaved parents who need support, to break the silence to promote the outstanding work of charities such as CHAS, CLIC Sargent, the Rainbow Trust, Bliss and the many charities across the UK that have come together for Baby Loss Awareness Week, and, most importantly, to break the silence for children like Rebecca so they are never forgotten.