Baby Loss: Covid-19

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.

The first time I miscarried, I was at work. I knew that something was not right, so I booked myself a scan during lunch break. I was by myself then, and they told me that there was no heartbeat. To be honest, what happened next was a bit of a blur, but I still remember the emotional and physical pain as if it was yesterday. I will be perfectly honest: a miscarriage is not like a period. It is incredibly physically and emotionally painful. The second time, we were further along. I was not alone for that scan. It did not make the news any easier, but I cannot describe the difference it made to have my hand held, gently squeezing support to one another.

During these losses, and throughout the pregnancy of my wonderful rainbow baby—the term for a baby born after miscarriage or baby loss—my friends and family were there every step of the way, and held me close to get me through those dark times. But my fear is for all those women who no longer have that support. That is exactly why I urge the Government to hold out for as long as they can to ensure that visitors can come to the scans of expectant mums, and to tackle the cause of the doubling of stillbirths during this lockdown.

I want to pay tribute to the Miscarriage Association. Without its support, I know that myself and thousands of women would still have struggled, and struggled alone. Social media is often a cesspit; but I have to say, for any woman who has miscarried, or is pregnant following miscarriages or baby loss, the Miscarriage Association’s website and forums on Facebook are an oasis of comfort, information and understanding. During this time, I know that we cannot hold the hands of everyone we want to. There are women out there, associations, charities and hospitals doing their best to get us through, and I hope the Government listen to their concerns and work with them so that no woman endures baby loss alone and so that women are no longer an afterthought throughout this pandemic.

I hope that today’s debate will shine a spotlight on the wider issues around baby loss. The uncomfortable truth for all of us is that in this country, according to the latest figures I have seen, we lose about 3.9 babies per 1,000 born in neonatal deaths—deaths within the first 28 days. In Sweden, the rate is about half that. That means that if we had Swedish safety levels in this country, about 1,000 more babies would live every year.

The Select Committee is doing a big inquiry into what lessons need to be learned. I will just talk about one particular lesson that has long been a concern of mine. We make it far too difficult for doctors, midwives and nurses to speak openly about any mistakes they may have made or may have seen, because still, in too many parts of the NHS, we have a blame culture. People are worried that they might lose their job, they might get disbarred or there might be negative consequences for others they work with. We heard on Tuesday that one reason why Sweden has managed to achieve a much lower neonatal death rate is that they have made it much easier for doctors, midwives and nurses to speak openly about things that may have gone wrong. They have managed to change a blame culture into a learning culture.

One thing I hope we will look at is whether it is appropriate under the law that the only way a family can get compensation in this country is if they can prove clinical negligence. That immediately creates antagonism between a family, who perhaps have a child born disabled and desperately need financial support for that child’s life, and the doctors, midwives and nurses responsible for that child’s birth, who also want to help the family with every fibre in their body, but worry that if they speak openly about what happened, they might end up with a successful claim of clinical negligence against them. I hope that is something we can address.

I want to finish by saying this. As we reflect on how to be more compassionate with people going through some of the extreme agonies that we have heard this afternoon, we should always remember that the best possible way to handle baby loss is to ensure that it never happens in the first place. Getting the culture right in our maternity units is the best way that we can save heartache for thousands of families. It is the best tribute to baby girls such as Lily and to baby boys such as Joshua Titcombe, and it is the best way that we can turn the wonderful intentions we are hearing in this debating Chamber into actions that will make a difference for the lives of many.

Donna was given three options to expel this pregnancy: naturally, through medicine, or through surgery. Due to covid-19, the options narrowed, and she was told she would have to go for the natural expelling of the pregnancy. She had so looked forward to having these babies, but it was not to be the case. Two weeks later, she went to the hospital with the saved remains to have them tested. She tells me a week later, she got a phone call from the clinic to tell her that her “product”—an unfortunate term—was ready for collection, and that she should make arrangements to go to the mortuary. She did that. She arrived at the mortuary, and had to sign a release form as the mother, which was another pull to her heartstrings and emotions. The whole experience was beyond surreal, and made her feel very emotional.

Donna was referred to the recurrent pregnancy loss clinic. However, the waiting list is now nine months, as the consultant in Northern Ireland who deals with this unfortunately has to shield themselves. As of today, she is sitting in her eighth week of being pregnant again, and is waiting for her next scan. I think we can all understand just something of the emotion and pain that she is going through. On the one hand, the mixed feelings of increased excitement, and on the other hand, increased worry and stress. Covid-19 obviously puts pressures on the entirety of the health system, and we have heard over the last few weeks the problems relating to mental health, and the increase in mental health pressures.

None of us can put ourselves in the shoes of an individual unless we have actually been there ourselves. This is an opportunity to make sure these issues are voiced, that people hear about them, and that they start to understand that these needs are practical ones. We might see a woman walking down the street and we will not know the trauma, heartache or mental health pressures that she has gone through. We do not know what the other, related problems might be with her family or her partner. I hope this debate will serve as a very useful, powerful and positive platform and opportunity for our constituents to know that this House cares, that Parliament cares, that the Minister cares, and that the Department will try to do something about it by encouraging our health service to direct its resources towards vulnerable and needy constituents.

As I walked through the hospital, three things really stuck out. The first was the emotionless, clinical places where parents first find out really bad and harrowing news. I can only imagine the isolated and lonely feeling that both parents must feel as they receive that news. The second thing that struck me was the fact that grieving parents might have to walk in and out of the hospital with celebrating parents. Of course, I do not begrudge any parent celebrating the birth of a child, but it obviously accentuates the trauma as grieving parents see celebrating parents with balloons and toys and other children running around.

Then I made my way to the mortuary, where it was pretty daunting to see the cold, clinical corridors. Next to the mortuary was the cramped room where parents can say their final goodbyes. There was also a laundry, and it struck me that having a tailored bereavement suite was the compassionate thing to do, which is precisely what the Woodland House appeal is designed to do, as it looks to raise £3.5 million to make a tailored space away from the hustle and bustle of the main hospital where families can spend time together in a safe, secure and serene surrounding before they feel ready to face the world again. I certainly wish the Woodland House appeal the very best of luck. I found out today that it is almost at the £1 million mark.

The Lily Mae Foundation, based in my constituency, was set up after Lily Mae, the daughter of founders Ryan and Amy, sadly passed away. I visited the foundation a couple of months ago, when I was allowed to, and was blown away by how the founders had achieved so much and made such a significant impact. Frankly, it makes me proud to be their Member of Parliament. I certainly hope that I can support them for many years to come. They do various things. They have regularly provided 10 hospitals in the west midlands and Warwickshire area with 500 to 600 memory boxes a year, which allow bereaved parents and their families to build precious memories for their babies. There are potentially siblings, so they provide sibling support packs to deal with the trauma that they might have.

Amy also undertakes one-to-one baby loss support. Currently, she is providing support to 47 clients with regular one-to-one sessions. It is a sad fact that the number of people who need those sessions far exceeds what Amy is able to currently supply, and there is a waiting list of clients. Of course, there is also much more complicated grief. I should mention her husband Ryan, who, when I went to visit them, was a week away from jumping out of a plane for their 10Ten10 campaign—it has been 10 years since Lily Mae passed away. Despite covid scuppering their plans, Ryan went ahead and did it, so I commend them for their passion and hard work, and I thank them for all that they do. I might even join them for a skydive one day.

Finally, I want to make two further points, because we are here to see what we can do to progress things. I want to put on the record my desire that hospitals do not place restrictions on partners during this really difficult period, because preventing visits to mothers who might be going through the most harrowing experience that they will ever face is a callous thing to do. Allowing them to at least have their partner there to support them through the trauma can only be a good thing. It should not be beyond hospitals to allow that. Again, I make a plea to ensure that we have sufficient bereavement suites, so that parents can deal with their loss in an appropriate manner.

I asked for a test to be done on that particular miscarriage, because it was further along than the other two. Unfortunately, I received a note from the consultant a couple of weeks later to say that they had not done the test and that the foetus had been taken to be incinerated. As hon. Members have said, it leaves people left wondering what they have done wrong. What could have been done differently? Not having answers is probably one of the most difficult things. I can only imagine how difficult it is for families who have had to endure this situation through lockdown conditions. We need to ensure that support is in place for such families.

By the time our second child arrived, I had been pregnant, almost continually, for 18 months. I have spoken openly about suffering from both perinatal and post-natal depression. The effects of baby loss are profound and long-lasting. The passage of time has softened my grief, and my mother always said you can’t put an old head on young shoulders, but if I can use today’s important debate to send a message to women who are coping with baby loss during this time of extra concern and difficulty with covid, I would say this: be kind to yourself, and be patient. Do not be afraid to ask for help from your frontline healthcare providers, and get any support that you need with mental health.

Taking the opportunity to tell our stories, as we are doing today, is a wonderful thing that women can do for each other. It lets others know that they are not alone, especially at this time, when we are more concerned about isolation and loneliness than ever before.

Those who have suffered the loss of a child during the covid period report that the new restrictions in our hospital environments, such as the need for staff to wear protective equipment, can present a barrier to delivering the kind of care that bereavement requires. One thing that I always mention in these yearly debates about baby loss is the terrible, isolating grief that such a loss brings. With the best will in the world, people often do not know what to say to you, because the loss of a baby before, during or shortly after birth is like no other loss. In the normal course of events, when we suffer a loss, whether of a husband, father, mother or brother, there is a life that has been lived and there are memories that people can talk about and take comfort from. They can talk about what the person was like and how they lived their life and so on. Those recollections can help people to bring comfort as they share the bonds of grief. But for those families who have suffered a stillbirth or a baby loss, there are no such shared memories. There was no opportunity to make those memories. All there is, is a deep sense of being robbed of a life—a life filled with potential that will never be realised.

During covid, the isolation of grief that always accompanies the unnatural event of burying your child is all the more stark. You cannot have the comfort of close family members. You cannot have people rallying round, as they would wish to, to distract you from your stupor of grief and your sense of bewilderment at the loss of the baby you have been waiting for for nine months and for whom you had prepared, perhaps even for longer than nine months. That rallying round is simply not permitted.

The most heartbreaking thing that a parent will ever have to do is bury their own child, but even the funeral comes with limitations during covid. The numbers of people who can attend are limited, so many people who would wish to attend might not be able to do so. Parents are denied the service that they might wish to have and the flowers, the hymns and the cards that they might wish to have. There are restrictions even on who can carry the coffin. These awful, grotesque choices and decisions that no one ever wants to have to make are magnified by their absence during covid-19.

Post baby loss, when the terrible news has been communicated to the wider family, when bereaved parents leave the hospital and return home and when the funeral has taken place, many bereaved parents seek the support of counselling from baby loss charities. I pay tribute to the marvellous work that those charities do, but they tell us that as they try to support parents and families through the trauma of baby loss, measures they need to put in place, such as social distancing, have had a major impact on access to care and support for bereaved parents and have also complicated the grief and responses to pregnancy and baby loss. The Lullaby Trust has pointed out that social distancing may exacerbate grief and isolation. I think that is something we can all understand. As we all struggle with this ongoing health pandemic, as it challenges us all in different ways, how much more are those parents who have lost their child going to struggle?

In this year’s baby loss awareness reflections, as we talk about the loneliness of grief, which is very particular when we are talking about the death of a baby, the context of covid-19 and the specific isolation it brings with it makes dealing with the awful life-changing event of losing a baby all the more horrific. I hope we can all consider how that can be addressed, to help those we represent who are going through this horror as we grapple with the challenges of covid-19.