I had little understanding of pregnancy loss until it happened to me. I assumed secondary infertility was the biggest challenge I faced and that, after IVF and a longed-for second pregnancy, that it was the end of a difficult chapter.
But, at five months pregnant, I went into premature labour at home and my baby died. With the advice of the emergency services on the end of the phone, I gave birth to my son on towels hastily laid on the floor and held his hand as I watched him slowly stop breathing. My first son, then five, had woken up from the sound of the ambulance outside and my husband had gone to be with him in another room. With the aid of paramedics, I walked to the ambulance, holding my baby. I remember how grateful I was that it was the middle of the night and that my neighbourhood was deserted. The feeling of my baby’s cold body against my chest as I travelled to the hospital will forever be present in my mind.
While in hospital, the care I received was compassionate but I was placed in a room on a labour ward and heard babies being born through the day. It was a deeply traumatising experience. I spent hours holding my baby, telling him I loved him and then, a moment so painful I am unable to find the right words, I had to say a final goodbye. Nothing can ever prepare you for watching your baby being carried from a hospital room, knowing you will never see them again. When it was time to leave the hospital later that evening, I momentarily forgot I was on the labour ward. I was faced with the smiles of elated parents as I walked with my husband, both of us broken, from the bereavement room to the lift and out onto the street.
It was only upon leaving hospital that it became clear how divided medical professionals are when considering the effects on a mother who has experienced pregnancy loss. I found that most doctors were kind, offering helpful advice and encouraging words. However, there were areas where greater consideration would have reduced additional trauma. I often felt a nuisance when calling the hospital, or my GP, with questions. On more than one occasion I was made to feel fraudulent when speaking of ‘my baby’ and not a miscarriage. Through those I have spoken to, it is apparent the quality of aftercare can make a substantial difference to how parents view their loss and how they are able to live through their experience.
Last month, the Government published its Women’s Health Strategy, a 10-year plan to improve the health and wellbeing of women and girls in England. Pregnancy, pregnancy loss, fertility and postnatal support was the second highest ranking category that women wanted the Government to address, showing there is an urgent need for greater understanding and better care and aftercare in these areas. The Government’s ambition for improved care includes pathways for those who experience pregnancy loss, with additional support through future pregnancies, especially if they have experienced multiple early pregnancy losses. Access to greater bereavement support was also cited within the plans. The recommendations to improve care and aftercare relating to pregnancy loss and fertility are being vocalised — it’s now down to those in power to make these changes happen.
Although a scenario you never want to consider, I would have found it useful to know the possibility of pregnancy loss at my first antenatal appointment. Not to scare me but as a way to give me the knowledge that things do not always go to plan. I was in my late thirties when I lost my five-month pregnancy and knew very little about potential problems. Educating parents on the causes and forms of loss, while being considerate of the language used, would be incredibly helpful. When I began to feel unwell during the afternoon before my baby died, if I had known this was a potentially serious sign, there’s every possibility that I would have gone straight to A&E. There is nothing to say my baby would have been saved had I gone to hospital, but I would have been in the best place to give him the greatest chance of survival. Instead, I feared I was overreacting and stayed at home.
Kath Abrahams, chief executive of pregnancy charity Tommy’s, told me she feels the current medical system could be improved to benefit parents during, and in the period after, pregnancy and baby loss. “Losing a baby at any point in pregnancy can be devastating. Our research continues to show the mental health impact of pregnancy and baby loss is profound. These feelings can be particularly difficult to cope with under the current system, as it is often hard for women and birthing people to access the care and support they need, and it can leave them feeling ‘invisible’. At Tommy’s, we have long campaigned for the Government to better invest in miscarriage prevention and treatment. We plan to work closely with the NHS to improve care and save babies’ lives, building on the findings from our Lancet Miscarriage Matters series. We want every family to have the support they need and deserve.”
The workplace can be a challenging space. If you experience an early loss you may not have announced your pregnancy, so your absence and distraction can be misunderstood or viewed negatively. If you had announced your pregnancy, a work environment can be a potential minefield of awkward or upsetting moments. Most companies are ill-prepared to support employees through pregnancy loss or fertility challenges. It is not an area that is greatly understood and is often seen as an experience to be ‘gotten over’ in a short space of time. Currently, there is no statutory paid leave in the UK for pregnancy loss, with employees having to use annual holiday dates, general sick leave or unpaid leave in the period after a loss.
Following Northern Ireland’s introduction of two weeks’ paid leave for parents who experience a miscarriage or stillbirth, Angela Crawley MP has been campaigning for paid miscarriage leave for the whole of the UK. The Miscarriage Leave Bill has not yet been passed, but many remain hopeful that this necessary acknowledgement of pregnancy loss before 24 weeks will soon be recognised as law. As it stands, employees in the UK are only entitled to paid bereavement leave following a stillbirth, which is currently classified as a loss after 24 weeks of pregnancy.
Last year, companies including Channel 4 and Asos introduced paid miscarriage leave policies. Liberty London recently introduced an enhanced family policy, which focusses on all areas of fertility and loss, with paid leave for treatment and counselling. Their policy reflects the need to acknowledge that these life events have a significant impact on women and men in the workplace. Chief marketing officer Madeleine Macey, who is its ambassador for the programme due to her own experience of loss and fertility challenges while at work, said: “I’m so grateful to Liberty to have been able to create a positive out of my experience. Making a family is not always straightforward and now the wider team know they are supported and understood if they come across these struggles, because life doesn’t go on pause when you swipe your staff card”. Liberty is one of the first major UK companies to implement these changes and the hope is that others will follow suit.
Following the loss of my own baby, I can see that an immediate allocation of counselling granted by the NHS would prove instrumental in parents’ ability to cope in the weeks after a loss. A designated midwife, or midwife team, available to speak with at any time of the day would be a much-needed lifeline for parents in their darkest moments. Guidance for all medical professionals, at any level, on how to talk to parents following pregnancy and baby loss would reduce the chance of unintentionally insensitive encounters during follow up appointments.
It’s clear we have a long way to go before this form of loss is recognised as a great trauma for many, at any stage in pregnancy. With changing policies in a growing number of companies and the recognition within the Women’s Health Strategy that these areas need to be better funded and greatly improved, the hope is that those living through this often traumatic experience would have their grief validated and the care that is so urgently needed would be in place at the point of their loss.
