Why Baby Loss Matters

It is dusk and 212 candles sit on my desk, each softly flickering their flame, each representing a life. I have been staring at them for just over and hour, reflecting on the 190 people who shared their loss journey with me. I ceremoniously recall the names of the babies the lights honour, the mothers and fathers they came from and the families they belong to. As I sit in the beauty of their glow, I feel overwhelmed by the unity of these lives, each of them adding to the light of the evening as it closes. It is April 2020 and we are in national lockdown due to the pandemic that shook up the world at the start of this year. Like so many, I am desperate for human contact and desperate to wrap my arms around each of the women and men who have bravely and generously shared their lives and loss with me. I gently whisper the names of your babies: ‘Jasper, Luna, Willow, Gracie, Poppy, the Peanut twins, Bodhi, Noah, Indie, April, Matthew…’ I see you; I feel you; you are loved, and you are missed. I recall to my mind every word of every story that has been powerfully shared with me, every loss birth I have supported as a doula and try to capture how I can begin to write a book that is right for you all. I call to mind those of you who will read this book after the experience of a new loss, another loss, or expecting a loss and offer you grace, while willing you great courage as you continue to read. I hold you in the moments of terrifying silence of your grief and I applaud you for your resilience.

Loss and grief are personal journeys, despite the many theories, psychological understandings and spiritual practices that we have built into our culture in an attempt to understand them, and there is no definitive way of doing baby loss ‘right’. Grief will manifest differently for us all, and loss and grief change shape in our lives as our experiences and circumstances evolve. There are drastic changes needed to address loss in our society and in maternity care, but I can say with certainty that everyone experiences baby loss in a way that is unique to them. How you come to interpret, acknowledge, define or live with that loss in your life will be very personal. At times it is going to feel, or have felt, as though you are totally alone, that your experience has been forgotten or avoided or shunned by the people around you, and at times it is going to be so present that you might wonder if you will ever be free from its hold. At times you will want never to be free from its hold, because it is the only thing that you have to remind you of the life that was supposed to be there in its place. For others loss will create new meaning in life, perhaps giving you a new path to forge. Baby or pregnancy loss may have left you feeling that you are grieving something of yourself, your identity or past. How you continue to wake up every day and do life without the baby or pregnancy that you carried or hoped for is not predefined: nobody has done it well, or right or better than anybody else, nobody is braver or stronger or worse off than you. Baby loss is unquantifiable and intimate, it is misunderstood and often hidden, it is lonely and can be desperately sad. Every individual experience of it matters.

"Families, I find, just want you to treat them like any other family you would care for. They want candidness, facts, compassion. Often, they just want to know why; which is sometimes something we can speculate on but often the journey to the answers they so desperately seek is long, and sadly, in many cases of death in utero, none can be found at all. They need to know that there is no ‘correct’ way to grieve and no ‘right’ way to respond when they see their baby for the first time, or if they decide not to see their baby at all. It is all valid." Sophie Simonson, bereavement midwife

Baby loss is experienced in many ways and occurs through a broad range of circumstances. It can be entirely invisible for some, with early pregnancy loss resulting in no physical meeting with your baby, while for others it can occur without your baby having died, but rather having been removed from your care. Sometimes baby loss happens because of planned but not realised attempts at conception, or the breakdown of a relationship resulting in the loss of your parenting role. Some face the heart breaking decision to end a pregnancy, and some parents face the tragic loss of one of their babies in the case of the loss of a multiple. Your loss experience may be very recent, or it may have happened many years ago. What unifies these experiences is grief and a profound physical and emotional sense of ‘missing’. The old English word for grief is ‘heartsarnes’ and it means ‘sore heart’. In many ways it is the perfect way to explain what happens: your heart can feel like it is breaking. Baby loss is a matter of the heart and the heart cannot be healed by intellectual activity alone. You can’t read or think your way through grief. Books and therapies and peer support, as well as many other tools, can help you to learn how to live with your sore heart, but the brain is not what needs fixing, and permitting your grief to take its course, led by what you feel, is a new form of learning for many of us. Loss and grief can also cause intense physical reactions, impacting your nervous system, hormones, immune system, sleep and digestion. Understanding your grief and learning how to find peace, connect with memories and identify how you are going to continue a life without your baby may feel impossible, but there are ways, there are tools and I have faith in your strength.

Your experience of grief may be lifelong, or it may fade; it may be peaceful or terrifying. Grief is a response to loss and this will change over time with days and events that feel manageable and others that don’t. It will feel hugely unfair and for some it will repeat itself, sometimes more than once. In some experiences somebody or something was to blame for your loss and life afterwards may become consumed by lawsuits and evidence, while for others their loss may be thought by those around them to be their fault. You will feel an entirely unique set of feelings, which may include sadness, depression, terror, loneliness, hope, despair, failure, jealousy and regret. The grief that comes from baby loss is not a linear pathway and there will be emotions that you experience that are interwoven with your personal beliefs, contexts, and previous life events. For some the initial shock of baby loss is overwhelming and all- consuming, while for others the unfolding of the months and years afterwards is when they face their darkest moments.

As a doula I have found that baby loss can carry a silent energy that whispers to others when you meet them, quietly sharing that you have an intimate knowledge of its depth. Perhaps it is this that makes the profound quality of peer support so important in our grief.

"When I walked into the room with her, I was so nervous, I didn’t want to talk about my loss anymore, it had been four months and I was tired. There were no more words left to say, but when I walked into the room, I looked at her and I knew that she had lost too. Something in her eyes told me that she had also walked this path and that was when I was able to start the therapy work with her that changed everything. She knew loss and right then, that was like a silent hand reaching out and holding my heart." Natalie Delai-Leigh, mother to B

Timescales of loss

When a baby dies, or a pregnancy ends, you may find that your awareness of daily events and activities becomes confused. This is not the case for all women and birthing people, but it is common for families to look back and reflect that time changed, stood still or passed very quickly. It can be extremely challenging to know what to do next. This can extend into not knowing how to continue to care for other children, how to meet your basic needs and how to function in your relationships with others.

The time that you have with your baby, if you get to meet them, will never be enough. It will be brief, and where you expected to have a lifetime of memories what you may actually get can be a blur of heightened emergency, sadness, medical interventions or a short and final holding of your baby in your arms. For many, these precious moments are not possible: perhaps your loss occurred early on, or you had to terminate your pregnancy. Time does not afford you what you and your body were geared up to experience, so what is left is an emptiness, a hole in your story that was supposed to be full of memories and life. You may feel that the pride you have in your baby doesn’t receive any audience or acknowledgement.

Baby loss often happens unexpectedly and the medical process can often dominate events surrounding your loss. This is not always the case, and if you have experienced baby loss as a result of many years of attempted conception it certainly won’t feel quick or sudden, but for those who expected to be on a nine-month journey towards meeting their child, experiences such as ectopic pregnancy, molar pregnancy and miscarriage can mean that the time between thinking that you were going to be welcoming your baby into the world and facing loss happens very quickly.

When we receive shocking news, we are usually given space and time to grieve and recover while we come to terms with what has just happened. The loss of a friend or relative is always very sad, but usually we can take our time to allow that grief to set in, while finding comfort in a life lived. In the case of baby loss, this initial period of grief can be surrounded by a lot of medical decisions and a lot of physical changes in the body of the pregnant woman. It is no surprise, therefore, that you might look back on the time of baby or pregnancy loss and find it difficult to clearly recall the events that took place. You might have a very specific memory, something that somebody said, some physical pain that you felt or a moment that stands out for you. It is important that the people around you understand that you are likely to be in shock, and it is important that you feel able to rely on support from them. If you have a doula or birth partner you might want to ask them to keep track of events. You may wish to go back to your medical records and review events and decisions, find out what caused the loss or seek support by debriefing your birth experience with a bereavement midwife or consultant. As your journey with grief continues you might choose to speak with a counsellor, psychotherapist or grief recovery specialist. You may turn to your faith, seek spiritual guidance, or join peer support groups to meet with others who have had similar experiences.

What our brains take in during times of shock and grief can be surprising and strange. For many the days immediately after loss hold specific moments and details that stick, while other decisions and interactions are completely forgotten. You might look back on your experience and remember precisely what you were wearing, or the visual details of a particular room that you sat in. You might remember the name of one member of staff at the hospital, or the first thing that your friend or family member said to you. For many there will be an association with a precious object, perhaps your baby’s blanket, their crib, a gift, or a card that you received. Over time it can feel like these objects are charged with the energy of your grief, holding within them something precious, painful, beautiful or sad. For some women, a specific sensation may remain present for years afterwards: the cold jelly in the sonographer’s room, waking up from surgery, or the moment that your baby was placed in your arms.

When we are in shock, our sympathetic nervous system, often referred to as the ‘fight-or-flight’ mode, is activated and the hormones adrenaline and cortisol are released. In evolutionary terms this sends a signal to our brain to remember the details of the ‘threat’, so that we can avoid it in the future. It may be, therefore, that the memories that make their way into your long-term memory are the ones that happened when your adrenaline or cortisol levels peaked. Where these subtle but important details remain, you may find that your future triggers are connected to those same sensations. If you experienced trauma during your birth or baby loss you may feel unable to allow your grief to unfold, returning over and over again to the traumatic event and replaying the shocking events in your mind. A recent cohort study published in the American Journal of Obstetrics and Gynecology and undertaken at Imperial College in London showed that one month after an early pregnancy loss, of the 737 women studied, 29% had symptoms of post-traumatic stress. This reduced to 18% at nine months. Post-traumatic stress is a reality for a lot of women who experience baby loss and can impact on their ability to begin to process their experience and rebuild their lives. Such stress can also be present for men and family members and for birth workers and companions.

"As we packed up the nursery and prepared for Liz to come home from the hospital, I found myself going into automatic mode, move this, hide this, stack these away. I was in shock, but this was something to do, she had specifically asked to come home to a clear house. I walked out to the shed to store some of the items and as I opened the door I froze: a highchair that we had been given by a family friend was just inside the door. I had constructed it a few weeks earlier, imagining the day when we would take it out, our baby able to sit solo at our table, strong and ready to eat. I couldn’t touch it, couldn’t look. I had to ask my mother-in-law to come and move it. I realised then how it must be for Liz, every object that I was stashing away had been pre-loaded with future memories in her imagination, all those things that you think are just practical aids, are actually loaded with hope." Luke, father to Maggie

It is extremely important that the people in supportive, medical, and caring roles at the time of baby loss remain aware and compassionate in their language and sensitivity. So often the memory of one sentence stands out in the minds of bereaved parents, and is it clear these words were insensitive in the context of their loss. Perhaps it is the knowledge of this that makes so many people fearful about what to say. But as with any area of social responsibility and care for others, where we are unsure about what to say, the best course of action is to educate ourselves, equip ourselves with better tools and take responsibility for our fears by learning a new set of behaviours. When supporting people in grief, we will say the wrong things at times, and within reason that is understandable: what matters is that we keep showing up and being there for the person who needs us and that we challenge ourselves to do better. It is likely that you will forgive the odd insensitive comment from somebody who went on to be supportive, compassionate and reliable for months afterwards, and that the people who ended their interaction with you out of fear of saying the wrong thing or in disagreement with your grief will be those that your long- term memory classifies as future threats.

Time can take another strange and painful turn in the months immediately after baby loss. You expected your days to be filled with the continuation of your pregnancy and preparations for birth, or full of the care of your newborn, so the days and nights can become drawn out and empty. The passing of each day becomes both a physical and mental endurance. The irony of the popular phrase ‘time is a healer’ takes on a new meaning: yes, you may find peace in your life and I am confident that you will, but the time immediately after loss can be overwhelming. It can be extremely hard to know how to fill that time, and for many the first step will be to seek out some peer support from meetings or online forums that can help to connect you with a community of people who will understand your suffering and empathically support you in the early days of your grief. In peer support environments you can see how other people survived the early days after loss. If you have worked with a doula or bereavement midwife you may turn to them for support with your immediate needs. At the back of this book there are resource pages full of services and support groups that you might want to contact.

The value of immediate support

Support after loss comes in many different forms and seeking it can initially feel like a lot of effort. It is completely understandable that you do not want to call somebody up or go to a meeting and face the reality of what has just happened: all you want is for it to be undone and untrue. You may be in shock, having physical symptoms of grief, and be utterly heartbroken, or you may be confused and unclear about how your pregnancy or conception journey has unfolded.

A lack of continuity of care within NHS maternity care, and the medicalisation of birth, means we have moved a long way from the magic connection, empathy, love and concern that is possible between birth workers and women. Unfortunately, the systems, policies and guidelines that inform the way professional health workers operate include professional boundaries which can feel unnatural. We can all understand why these boundaries are there, and yet, while your bereavement midwife may be a great person for you to talk to while in hospital, or in the days afterwards, there is nothing more powerful than ongoing empathic listening and connection from another person’s heartfelt connection with your grief, and your relationship with that person needs to feel personal. You may not feel that you have any words, and that you will be in tears or speechless, and this is okay. Many of the support helplines anticipate that people will call them in a state of utter desperation. Other than dialling a number, this step towards support requires nothing from you and can be a powerful first step. One of the greatest things about peer support is a reduced sense of isolation. It allows you the possibility of hearing what you might do with the immediate emptiness, while knowing that there is somebody there who has survived while their heart is breaking.

It is never too soon to receive support. If you need to speak with somebody urgently there are phone numbers, online support groups and charities listed at the end of the book. They are dedicated to listening to you, and their support may be the first step towards lessening your immediate pain.