Baby Loss: Covid-19 Debate
Full Debate: Read Full DebateJim Shannon
Main Page: Jim Shannon (Democratic Unionist Party - Strangford)Department Debates - View all Jim Shannon's debates with the Department of Health and Social Care
(4 years, 1 month ago)
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This is now the fifth year the House has marked Baby Loss Awareness Week—as with many things, covid-19 caused some delay, as Baby Loss Awareness Week took place a month ago—and I am pleased and grateful that we are here today. It is extremely encouraging and moving that right hon. and hon. Members have ensured that this important issue has been debated often in recent years, helping to deliver an unmistakable message outside this place about its importance in Parliament, the Department of Health and Social Care and the national health service. Most importantly, that sends a message to bereaved families, letting them know that there are people in this place who truly understand how it feels.
Please forgive me for telling my story today, in as much detail as I dare. It is important to me that my baby’s short story helps to shine a light on what is a really dark situation for many people. “I can see straightaway that something isn’t right”—those are the words that broke my heart and changed my life forever. It was 3 January 2019, and my husband and I were at the routine 20-week scan for our second baby. My first pregnancy had been healthy and straightforward and resulted in our fabulous daughter. At age 42, I had been slightly anxious about my 12-week scan, but happily all tests had come back clear. My midwife encouraged me to birth again at our midwife-led centre, and I was keen to stay healthy in order to do just that.
We had celebrated a low-key but cosy Christmas and new year with family and friends. I felt content and reassured by my kicking baby and wondered what the following year would bring. Three days later, we went for our 20-week scan and would receive the terrible news from the sonographer that our baby had an extremely severe form of spina bifida. I lay on the couch and grabbed my husband’s hand tightly. Tears stung my eyes—not unlike now. When I glanced at him, his eyes were watering, too. We did not dare believe what had just happened.
Just over an hour later, we were sitting in the office at our main hospital, the Royal Cornwall Hospital in Truro, with a wonderful consultant and an incredibly kind bereavement midwife. We were met at reception and taken to a small room and brought some tea. I just knew this was not going to end well, but I did not know what to expect. I was checked again, and any hope we had was extinguished by a slow and silent shake of the head. But my baby was still kicking. So started the most traumatic weekend of my life to date.
We had no idea what would happen next. Our world had started to swim and spiral away, and neither of us knew what questions we should ask.
I will try not to get emotional myself. I understand the hon. Lady’s grief—we all do. We understand how important it is for parents to come through this terrible time. We have had similar things in my own family, so I understand exactly how she feels. I was trying to give her a bit of time, and what do I do? I start to blubber as well. I apologise for that. I just want to say that I really feel her pain.
I am most grateful to the hon. Gentleman for his intervention, which has succeeded.
I must say that we were looked after with extreme kindness by everyone at the RCHT. Not a day goes by when I do not think of them and thank them silently. On that day, we were barely left alone. We were provided with lots of information and given lots of time to process. I want to emphasise that, because what comes next feels pretty brutal. However, the staff make it all as bearable as they can, but it is shocking when it happens, and I want to convey that.
We were talked through what I am going to call the process. Before we left that day, I had signed a form to consent to infanticide—the termination of our much-wanted baby’s life. This is a decision that the mother must make, as the baby still belongs to her body. I could have chosen not to do this, but at nearly 21 weeks gestation my baby had no rights of its own. To be born before dying, a midwife would stay with the baby until it passes away. I am told that this is much more traumatic for the baby.
The next day we returned and endured the procedure. I have never felt so helpless. I was voluntarily allowing somebody to inject a long needle through my skin, into my womb and into my baby’s heart, so that they could inject some potassium to end that little life. Our baby was very strong, and it took longer than it usually does. I hung on to my husband and let him be strong for me, not that he felt that he was. I felt my baby kicking until the very end.
Two days later we returned to the RCHT. It was a Sunday morning, and we had been told to go to the Daisy suite. That is where women birth if their baby is going to be stillborn. It means they do not have to interact with other pregnant women or newborns while labouring. However, when we got there, it was being used by another woman who was there with her dad. She had been brought in as an emergency the night before, and her baby had stopped moving at 38 weeks. I felt that she needed the space more than I did.
I was induced and endured an eight and a half hour labour, which was much longer and far more intense than with my first baby. Finally, I delivered. I had not planned to look at my baby. To be honest, I was scared of what I might see. The midwife said to me, “You have the most beautiful baby girl.” And there she was, a perfect, beautiful, sleeping girl. She was tiny. She looked just like her big sister. I held her, I kissed her and I told her how much she was loved, and then I let her go. We named her Lily Wren Mackrory—Lily for peace, Wren because she is our smallest little girl, Mackrory.
Baby loss is far more widespread than I ever realised before it happened to my family. Many people are bearing this grief, often silently. Pregnancy and childbirth have always been perilous for women. Even now, in 2020, with all our medical advances, there are so many babies we simply cannot save. Miscarriage, stillbirth and the death of a newborn are all too common. Thousands of parents experience pregnancy or baby loss every year. It is estimated that one in four pregnancies ends in miscarriage, and 14 babies are stillborn or die shortly after birth every day in the UK.
I do not want to be completely self-indulgent during my speech today, but I do not know how else to relay how raw that feels for those parents and how important it is that we talk about it. I have one word to describe the grief I felt following the loss of Lily—primal. I just wanted to bring my baby home. I wanted her to be healthy. It dominated my entire being. I wanted to watch her kicking feet and to feel the grip of her tiny fingers on mine.
Weirdly, I gained an understanding about why some species, particularly penguins, steal each other’s babies when their own eggs do not make it. It is a physical ache down the arms and in the stomach. What had I got wrong? What had I eaten or not eaten that had made her so poorly? Was it because I was too old? Since I already had one healthy, amazing child, perhaps I had simply pushed my luck. Of course, none of that is true.
Having our then four-year-old meant that a daily routine had to continue, thank goodness. My husband and I were alarmed by the statistic we read that 50% of couples who experience baby loss end up splitting up. We were determined not to be one of them. We vowed to let each other grieve at our own individual pace and not to expect too much of each other. One would take the load when the other felt overwhelmed, angry or helpless. We allowed family and trusted friends to help us as a couple, as well as separately, but during the worst days I thought I would never recover. People do, of course, but they are changed. That was how 2019 began for me, and it ended with me coming into this place.
The experience I have just described is fairly shocking when it happens, but sadly it is not unusual. This year, Baby Loss Awareness Week focused on highlighting baby loss during the covid pandemic. From start to finish, I simply could not have got through that horrendous weekend without my husband at my side, yet we have been expecting women to do that since covid hit our shores earlier this year. As co-chair of the all-party parliamentary group on baby loss, I have had the privilege of listening to many experiences and testimonies and learning what baby loss charities and the APPG have achieved so far. Despite my position in this, I am still fairly new to the experience.
Last year, during Baby Loss Awareness Week, before I became a Member of Parliament, I attended a service in Truro with my husband as a member of the public and a bereaved parent. I looked at the book of remembrance, at Lily’s date, and there was her name in full. It was the first time I had seen it written anywhere, apart from in a small memorial that we had placed on my grandmother’s grave. There was another name there: a little boy named Isaac. I realised straightaway that he was the baby boy who had been born on the Daisy suite on the same day as Lily.
In August 2020, the APPG held a virtual meeting—my first as co-chair—focused on the impact of covid-19 on pregnancy and baby loss. We heard evidence from organisations that support women and partners who experience loss at any stage. The evidence was stark. Covid-19 has exacerbated existing challenges and has had a negative impact on the experience of women and their partners and families at the worst possible time of their lives. Hospital trusts that had traditionally been struggling in this area appear to be the most vulnerable.
I will summarise what the APPG found. Partners have been excluded from appointments and scans, and often have not even been able to join the consultation by video or speaker phone. That has led to women receiving bad news or making decisions alone. In a neonatal setting, mothers and partners had visiting rights severely restricted. Those factors all increased the sense of isolation experienced by bereaved women and their families. Thanks to a successful campaign led by my hon. Friend the Member for Rutland and Melton (Alicia Kearns), many trusts have reversed the decision to prevent partners from being present at scans and births. However, many still cannot or will not.
Women have reported restrictions on the way that they can access health services relating to their pregnancy. They often find that accident and emergency is the only route available. Scans have been cancelled, and mothers with concerns about their baby’s movement have reported being sent away from hospitals. Some key staff, such as health visitors, have been redeployed during the pandemic, which means that women cannot access the services they need. After receiving bad news, information on options and choices has not been forthcoming. For example, women report a lack of information about pain, bleeding and what to do with pregnancy remains after experiencing a miscarriage.
In maternity and neonatal settings, a lack of time and available space has impacted on whether staff can provide opportunities for memory-making after a stillbirth or a neonatal death. That is massively important for grief and recovery. In some cases, women chose not to access health services, taking the important “stay at home” message of the Government’s campaign to heart. In the early stages of the covid pandemic, in some hospital settings, personal protective equipment was a barrier to delivery of compassionate bereavement care, and staff struggled to communicate in the way they would prefer. Hospitals reported shortages of face-to-face interpreters to help communicate with women who do not speak English. After a stillbirth, neonatal death or sudden infant death, some families whose baby had a post-mortem had the results communicated by post or email, which is not appropriate.
Although some new ways of communicating began during lockdown, such as virtual antenatal appointments, they are not accessible to all and do not always provide the same reassurance as an in-person scan or consultation. I even heard the tragic story via one of our bereavement charities of a woman who had given birth to a stillborn baby, and because the mother had tested positive for covid, her baby was simply zipped in a body bag and taken away. I must add that that was at the height of the pandemic in April.
The APPG found that lockdown had exacerbated risk factors for some types of baby loss—particularly involving deprivation and domestic violence. After a loss, the isolation of lockdown contributed to negative impacts on women’s and partners’ mental health and their ability to access support from friends, family, psychological professionals and community outreach services.
In response, the APPG called on NHS England to initiate a minimum acceptable standard for involving partners when pregnancy or baby loss is anticipated or occurs, whether in relation to attendance at scans or appointments, or parental access to neonatal units. There is too much variation between hospitals at present, which must be addressed with national guidance. I know that that has already begun. I also ask for the swift reinstatement of the provision of choices for women facing pregnancy or baby loss in respect of the mental health impacts of covid-19 on those bereaved through pregnancy and baby loss, in order to plan services for that group in the future.
I thank the Department of Health and Social Care; health professionals; baby loss charities such as Sands, The Lullaby Trust, Aching Arms, and particularly Cradle in Cornwall and a lovely lady there named Emma Pearce—there are so many to mention; Members of this place, past and present; and, most of all, bereaved families for their co-operation on the work to date in this vitally important APPG. I hope that, while in post, my right hon. Friend the Member for South West Surrey (Jeremy Hunt) and I can continue their important work and bring solace to families in their darkest time, as well as trying to prevent more losses in the first place. I look forward to working with colleagues, including the Minister, to achieve that.
I thank the hon. Member for Truro and Falmouth (Cherilyn Mackrory) for applying for the debate, and everyone who has made a significant contribution. They have all been personal and heartfelt. I have spoken numerous times on this issue.
I thank my hon. Friend for giving way. One issue that this debate helps to address is the impact on the expectant father, as well as the mother, which is sometimes forgotten. I know the impact it has from my own experience 18 years ago. Thankfully, men are now more willing to speak about these issues, which is a good thing, but we must dwell on ensuring that the services that are provided are all encompassing and address the needs of men, as well as the most important needs—those of the mother of the unborn child.
I thank my hon. Friend for intervening. I have made it my business to speak in every debate on this issue. I have looked at some recent facts. In 2018, each day in the UK there were 2,060 babies born alive, 515 babies were miscarried, 144 babies were born pre-term and eight babies were stillborn. The reason I stand here today is to pay tribute to the thousands of heartbroken mothers and fathers.
As my hon. Friend the Member for North Antrim (Ian Paisley) said, that emptiness cannot be explained unless it is experienced. I have not personally experienced it myself in my own family, but my mother did. I remember very well that my mother had five miscarriages. That was in the 1960s and 1970s. It was a totally different time. When someone had a miscarriage, people did not talk about it. They would say, “I’m sorry to hear of your loss, but you can always try again.” Two days later, they would be back at work. My sister had three miscarriages and one wee boy who is disabled. That loss is real for her. My private secretary, Naomi, who writes all my speeches and prepares my business for me—a very busy wee girl, by the way—had two miscarriages. I lived through that experience with her, not personally, but as an employer who understood what that heartache and pain was like.
Since the last debate on this issue, so many people contacted me—not because of me, because I am just nobody—to say, “Thank you for speaking up for us,” including people whose partner had carried their baby to full term knowing that baby was neither going to live or breathe beyond two hours. The hon. Member for Truro and Falmouth told the story in her introduction. That is a real story for some of my constituents. That is why I am here today.
I have two asks of the Minister, if I may. The Minister knows I am very fond of her. I look forward to her response, because I know she has a compassionate heart and understands what all hon. Members have said on behalf of their constituents and themselves.
More testing must be available on the NHS for those who lose two babies in a row rather than three, as is the case currently. I am very close to a young lady who lost two wee babies in a row. She went to her appointment at the Ulster Hospital—my local hospital in Northern Ireland—early pregnancy unit to confirm that all of the baby had come away. The midwife—the hon. Member for Sheffield, Hallam (Olivia Blake) referred to the midwives—compassionately advised her and her husband to look at private options when they talked about their despair. It was terrible that they had to go elsewhere to get that help, but they paid for the private consultation and private tests, and found that something as simple as taking an aspirin daily could possibly address the blood clotting issue that had caused the loss of her little loved ones. For the life of me, I cannot understand why we traumatise women by making them go through a third loss before they can get the help that they need. That is my number one request to the Minister and my Government.
I sincerely urge the Minister to take this back to Government and press the case for at least rudimentary tests to be carried out. I have been contacted by a nurse in my constituency begging me to address the lack of support under pregnancy during the coronavirus. The hon. Member for Sheffield, Hallam and others spoke of that. I want to read from her email:
“It was a terrifying, lonely experience made worse by the fact that when I attended the Ulster hospital on Monday morning to have the assessment and scan to confirm if I was indeed miscarrying, I had to do so alone while my husband waited in the car due to the policy of only admitting the patient to the appointment”.
My heart aches for that separation, of which the hon. Member for Sheffield, Hallam and others spoke. It is a real trauma for those involved, including the nurse and the midwives, and those who have to advise because of the special times we live in.
I understand the difficult times, but the fact is that a woman needs the support of her partner and her partner must be allowed to give that support. The Prime Minister’s reply—he has been quite good with his replies—said that fast and efficient tests will be made available, but we want to see that in place right now. We need to allow support partners to have tests immediately to allow them to attend appointments with their expecting loved ones. Again, I look to the Minister to assure me and others that such people will be on the priority list for a fast test.
Miscarriage is so devastating to families. The effects are felt for years. I remember one of the first cases I heard as a Member of the Legislative Assembly in Northern Ireland of a constituent who lost her baby in the ’60s. She told me that she was never allowed to talk about it and mourn. Sixty years later, she still thinks about that. It does not matter how long ago it was; it is still real every day in life.
We must do better for these families, and offer hope, testing and support in taking steps to allow their loved one to be with them every step of the journey. I simply do not want to have to read again of the devastation that my constituent described:
“As a result of this policy my husband learnt of the loss of our baby in the car park of the Ulster hospital, hardly a suitable or private place for a sensitive and emotional conversation. His role as parent was completely undermined and dismissed by this policy”.
To conclude, the journey is that of a family, and the family must be allowed to provide whatever support and love they can give in the face of a devastating loss. To those who have lost a baby I say, “The loss of your baby is important. Your pain is real and you have the right to grieve the loss of the future that you had planned together. It is my honest belief as a Christian and a man of faith that your wee one is safe in the arms of Jesus until you can be with them again.”