The loss of a baby, however it occurs, can be heartbreaking and painful and leave parents in need of support as they grieve. While awareness about baby loss is increasing, the suffering and sadness, isolation and loneliness parents feel is often invisible and it can be hard for them to reach out, and for those around them to know how best to support them. Why Baby Loss Matters explores what happens when families experience baby loss or the end of a pregnancy, drawing on the first-hand experiences of parents who have navigated life and the fourth trimester without their baby, and the vital work of charities and services which offer support. By examining different approaches to coping with the loss of a baby and keeping memories alive, the book offers insight into the ways that families have found the support and peace that they need to continue living after saying goodbye.
Baby loss – a personal path
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 heartbreaking 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
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