Historically midwives have been supporting women to give birth in their communities for thousands of years, long before the term ‘midwife’ even existed. These women, healers and village elders, would be there to welcome new life and assist families to deliver babies that did not survive. Our role hasn’t really changed, only this aspect of a midwife’s job is still not talked about, nor is it perhaps commonly known that bereavement specialist midwives exist. As a society we are not comfortable discussing death, let alone baby death. Overcoming this taboo is a shared goal for all baby loss charities. Sadly, 1 in 4 families will lose a baby in pregnancy or birth. It is not a rare, isolated event.
What is a bereavement specialist midwife?
The current role of a bereavement specialist midwife has evolved over the last few decades but not all units have a bereavement midwife in post.
Families will often ask, ‘how do you do this job?’ My reply is simple: ‘because you matter and your baby matters’.
Sadly, we cannot change what has happened, but we can support a family through this ordeal, one of the worst life experiences they will ever encounter. We meet families who have recently received the news that their baby or babies have died and support them as this trauma unfolds. At my Hospital Trust we focus on providing psychological and practical care. We create safe space for a family to begin to process this news and to grieve, making them feel loved and safe. We know they have limited time to physically parent their baby. Our role is to help them do this, empowering parents when everything appears to be out of their control.
We talk about birth and how we can guide them through this. Wonderful charities like 4Louis and SIMBA provide memory boxes. Judah’s Cloud have designed 2 identical outfits so that parents can keep something that their baby has worn. From the moment we have contact with parents, every interaction becomes part of the memory of their baby. We want parents to know that we care.
Research tells us that poor care makes everything worse. Parents can spend as much time as they want with their baby and make memories that need to last a lifetime. We make footprints and handprints together and do many of the normal things you do with every newborn.
Initially, parents can be very fearful to see, touch or cuddle their baby. Role modelling helps to lessen fear and anxiety. Once parents see that we treat their little one with the same loving care and attention as any baby we can step back to assist them with nappy changing, bathing, dressing or reading a story to their baby. Whatever is needed for their little son or daughter. There are intimate moments of joy and pride amidst the tears.
We dedicate time to talking through incredibly painful topics like post-mortem and funerals. No parent begins their pregnancy journey expecting this tragic outcome, so they are entirely unprepared. We discuss things gently and gradually when families are in hospital.
Everyone’s experience of loss is different, which is why individualised, culturally sensitive care is so crucial. We make no assumptions – what might be right for one family is not for another and we respect their wishes tailoring care accordingly.
What happens next?
A large team are involved in bereavement care within the hospital and community. You will often hear the phrase ‘one chance to get it right’. We coordinate and communicate with them to provide continuity of care. We want to avoid families having to retell their story each time they meet someone new. The National Bereavement Care Pathway (NBCP) was developed so that all parents are offered the same high standard of bereavement care when a baby dies whatever their individual circumstances.
I work closely in a small team and they are my greatest allies. We have started working with a psychologist allowing us a confidential, safe space to talk through difficult situations and feelings. I really appreciate this protected time and feel lighter afterwards.
I have also worked for Tommy’s for nearly 10 years on the support line, where I apply many similar approaches from my frontline work. I anticipate the needs of parents who may contact us having received devastating news. Sometimes I listen, at other times parents have questions about practicalities, coping in the immediate aftermath or knowing what their options are.
It can be months after the event that a bereaved family contact Tommy’s needing more psychological support or when they are pregnant after loss. During Baby Loss Awareness Week, we often receive calls from parents who were bereaved many years ago and need to talk. The ripple effects of baby loss affect families all their lives.
Losing a baby is not just that instantaneous grief, it’s also prospective grief – those moments and milestones you’ll never have, the person you’ll never know.
Taking that first step and reaching out for help is one of the hardest things to do. The baby loss community is there when you are ready.
How can you help?
At Tommy’s, we also often get calls from grandparents, wider family and friends, who are themselves shocked and unsure of how to best support parents. I signpost to specific information, campaigns and charities, but also try to pass on some key advice:
Everyone is worried about saying the wrong thing, healthcare professionals included. Someone may avoid talking to a family member or friend experiencing loss due to fear that they will upset them. Remember, they cannot be any more upset than they already are, as the worst thing imaginable has happened. Not knowing the right thing to say shouldn’t result in not saying anything at all.
In 2018 Tommy’s together with Channel 5 conducted a survey of 317 people in the UK who had experienced stillbirth. Sadly, half of couples had been ‘shunned by friends’ due to their failure to understand their bereavement. I have listened to these stories first-hand, where friends have crossed the road to avoid speaking to the parent who has lost a baby, or their older child has been excluded from playing with other children solely because their baby brother or sister has died!
Don’t be tempted to try and put a ‘positive spin’ on the situation. There isn’t one. Insensitive comments only compound grief and the sense of isolation parents are feeling. As Brene Brown says, rarely does a compassionate response begin with, ‘at least’.
Soon after a baby’s death parents don’t feel hopeful. It is not the right time to offer false reassurance, minimise their feelings or tell them how to feel.
The best advice I can give to those looking to support a loved one through baby loss is to be there for them. Say you are sorry. Mirror their language and emotion. If they mention their baby’s name, ask if you can use their name too. Acknowledge their grief – there is no right or wrong way for them to feel and grief happens at the pace of the griever.
In practical terms, send a card, leave a meal on the doorstep, be clear with offers of help so a person can accept or decline. Sometimes it might be that a couple need time alone but still offer an invitation, acknowledging their loss so they don’t feel even more isolated or excluded.
Remember their loss, they may appreciate that you make an effort on anniversaries as you would a living child. Many parents want the chance to talk about their baby.
As a bereavement midwife, you are there for people through some of the worst moments of their lives. It is a physically and emotionally demanding job, and maintaining a level of objectivity is important to anchor each family that you work with. I am so sad and feel deeply for each family, but I must stay grounded to advocate for them. Paying attention to the little things, offering information and choice brings some comfort to a family as they navigate their new reality being able to facilitate this is both rewarding and fulfilling.