Supporting families through pregnancy loss and the death of a baby
This is a topic I really wish I didn’t have to prepare for, but unfortunately there are many many families out there that experience loss, and I want to be able help them, in any way that I can. I may never have a client experience this whilst in my care, but I know that as a friend, a sister (/sister-in-law), a cousin, and a human being I will know people that need this support, and maybe there is some information in the following that can help you better support a loved one in this position.
Most people that know me will know that I have lived experience in this area, having suffered from recurrent miscarriage before the birth of my daughter. It is not something I shy away from talking about as it is part of who I am, I don’t want my unborn babies forgotten about and I want to do what I can to raise awareness of baby loss and support others experiencing it. Thankfully it is becoming more commonplace to discuss baby loss, but I still believe there is a fundamental lack of understanding about how baby loss can affect a person, and how best to support somebody who has experienced it.
In my efforts to be better prepared, I attended a seminar with SANDS recently on how to support families through pregnancy loss and the death of a baby. SANDS is the leading stillbirth and neonatal death charity in the UK, focused on reducing the number of babies dying and ensuring that anyone affected by the death of a baby receives the best possible care and support for as long as they need it. The charity provides bereavement support through its Freephone helpline, mobile app, and through a network of around 100 regional support groups – there is even a SANDS united football club.
There are many forms of baby loss, and they all deserve recognition. Baby loss includes: miscarriage, the loss of a baby before 24 weeks; termination due to foetal anomaly (TOPFA); stillbirth, the loss of a baby between 24 weeks and birth; neonatal death, baby loss within 4 weeks of birth, and sudden and unexpected death of an infant (SUDI – previously know as SIDS or Cot death).
Approximately 5,000 babies a year die, the equivalent to 14 a day; 30% of these deaths are at term which equates to 1 in 150 births; 1 in 4 women are affected by miscarriage. There is a lot of inequality with black women twice as likely to experience baby loss and 40% more likely to experience miscarriage, Asian women 1.6 times more likely to experience baby, and those living in deprived areas, under 20 or over 40 being at an increased risk.
A focus of the seminar was on sensitive and effective communication. The baby may not be alive but they are still the most important thing to these parents, it is still their precious child and needs to be treated this way. That could be by referring to the baby by their name, as him or her, or as ‘your baby’ and not ‘the foetus’ etc. Refer to the parents as Mum and Dad, congratulate them on the birth of their child, but above all validate their feelings, mirror them and follow their lead to observe their coping mechanisms.
On a personal note, I will never forget (or forgive) the Dr who told me that my pregnancy test was showing up as negative, so this latest miscarriage was just my period. I was already on loss number 3 or 4 and had probably taken 5 or 6 pregnancy tests in the days running up to that bleed. I may not be pregnant now, but I was. I am sure he didn’t intend to kick a woman already on her knees, but he should have known better, he should have been more sensitive in his communication.
In the seminar I learnt about how unique a parent’s experience of loss will be. There may be feelings of shock, grief, numbness, denial, trauma, disbelief, anger, fear, guilt, loneliness, emotional amnesia or hope; they may exhibit emotional outbursts, disorganisation, new patterns of behaviour, form new relationships or focus on helping others. They are more likely to experience PTSD, anxiety, depression and phobias and many of these experiences are lifelong, certain elements may fade over time but that child will have a first and an 18th birthday, there will be a moment in time when they might have had their own child, or got married and these may be triggers for parents. For some people the loss will negatively affect their self-esteem and self-confidence, they may feel their body has failed them, that they have failed their baby; others may feel an immense sense of pride for their baby. The parents are unique, this is a unique experience for them and they need personalised, individual care.
It is also important to remember that baby loss affects the whole family, both parents are at increased risk of depression, anxiety etc and there is also the wider family to consider. That baby may have had siblings, grandparents, uncles, aunts and cousins, who may be minimising their own grief to support the parents, but that grief needs to be addressed at some point.
So much about being a doula is about enabling my clients to make informed choices, and this applies to supporting parents through loss too. When they have had so many choices taken away from them (where their child may go to school, how will they be dressed, how to decorate a nursery etc) then it is important that they are enabled to make choices for their child where they can. These choices can include how and when they want to tell people what has happened; what do they want to do about lactation (suppression, donation to milk banks); ensuring they know their options for making memories (hand and foot prints, lock of hair, photographs, birth and death records, bathing or dressing a baby etc), about testing, investigations or post-mortems; funeral arrangements; how much time they want with their baby - most hospitals can provide ‘cuddle cots’ and in some circumstances it is possible to take your baby home; access to chaplaincy, faith leaders, peer support, mental health support, local support groups etc. It would be my job to ensure you know your options and to signpost to relevant services.
I also learnt about why people need time to make these choices, because trauma has a physical effect on our brain. The experience of ‘danger’ in the experience of baby loss can cause our brain to focus on survival rather than processing what we have experienced. Our learning and thinking brain, the prefrontal cortex, stops working and we can experience brain fog or memory loss as the limbic system takes over. Thinking again about my own experiences here I know that huge chunks of the 18 months or so that we were experiencing these losses are missing from my brain, major life events are a blur and I felt I was experiencing lift through some sort of translucent screen.
It is also important not to forget the physical aspect of baby loss, be that recovery from a birth, lactation, lack of sleep or a physical response to an emotional trauma for example a reaction to hearing a baby crying.
All of this can affect the way a person may respond to baby loss. Anyone who experiences baby loss should have an emotional and mental health assessment, and referral. It is important that they know where to go to access support and that this is checked and offered again as time goes by as they may be unable to process information in the immediate aftermath of a loss.
This again brings me back to sensitive and effective communication, it is so important to be gentle, patient and kind – take your time, gather your thoughts before you enter the room and leave your own emotions at the door. Make eye contact, sit down, consider your language and listen. Be clear, concise, straightforward, and honest – don’t offer false reassurances, never use the word the word ‘at least’, don’t try to silver line it; you can’t fix it but you can offer empathy and compassion. Empathy fuels connection whereas sympathy drives disconnection – empathy is about perspective taking, removing judgement, recognising emotion and feeling with them (not for them).
I have mentioned my own experiences a couple of times in this post, and self-awareness is so important here. If you are supporting somebody who has experienced baby loss, try to recognise your own triggers and drivers, notice your own feelings and offer yourself some self-compassion. I know that I will need to lean quite heavily on my own support system, my mentor and my fellow doulas if supporting families through baby loss, or through pregnancy and birth after loss. It will be my job to accompany my clients on this journey, but I will have my own feelings to feel and I can only do my job properly if I have my own boundaries and can separate my feelings from yours, to dig deep into my own tool kit.
Baby loss triggers big emotions in me, but that is why I am so passionate to support those experiencing it.
Doula Bea x
For more information and support visit www.sands.org.uk, email helpline@sands.org.uk or call 0808 164 3332
