#babyloss awareness – More than just sad stories told sadly

In my posts about the run up to Baby Loss Awareness and #ISACork2017 I highlighted  the wealth of action, activities and research on baby loss.

The research abstracts give an insight into the breadth of issues around this most sensitive of topics. By its nature much of it is focused on health issues such as prevention, maternity care and the immediate aftermath with some notable studies of bereavement care.

The latter will form part of the focus of activities and campaigning during Baby Loss Awareness Week but there is much more to it than that. I understand that with only one week maximum results require targeted efforts rather than a huge shopping list of concerns.

That said, this is a long running and continuing effort to keep issues around baby loss on the agenda and have the eye and ears of those able to help change things for the better.

In telling my own story it surprises me how many different aspects there are to it. In learning about the experiences of other bereaved parents we start to get a picture of the wider system and how it fits (or doesn’t fit) together.

It runs from the beginning, prevention, awareness of risks. As mentioned in my #ISACork2017 post, awareness of risk factors is low. Many of these deaths are preventable, they are not inevitable. Where they do occur they should be investigated meaningfully.

It covers the antenatal and wider education of expectant parents. I’m fairly certain that had we not been part of an NCT group the possibility of baby loss would not have been mentioned in our group. It should but again from research by Sands we know that the phrasing has to be careful if it is going to influence. Antenatal education should recognise that some expectant parents may have lost babies and encourage them to take part so they don’t exclude themselves from valuable advice and support.

#AlwaysAsk should be firmly in parents minds and healthcare professionals need to respect that if it is to have any meaning or impact on stillbirth prevention.

There needs to be training in bereavement and palliative care to prepare healthcare professionals to support parents but also to be supported should it happen. It’s about having access to bereavement midwives, appropriate surroundings and having the space and time to capture memories.  It’s important that any bereavement education is available to all health care professionals involved in maternity care including sonographers and administrative staff.

Birth plans are always a tricky area for live births, they are even more so for stillbirths.  Preferences matter and it is important that bereaved parents are given the information they need and understand what will be available to help them through the birth.

It is also about access to clear information on what burial / cremation options mean. Not by hiding it away in a leaflet but having a talk when the time is right about what is involved and the consequences of those choices. We have seen too many scandals over shared burials and baby ashes and how they prolong grief and pain to believe that it is truly in the best interests of parents to try and protect them or accept decisions made in a fog of grief.

There needs to be thorough and routine investigation of stillbirths to ensure that lessons are learned to prevent it from happening again.  We know from numerous studies that this doesn’t always happen.  It should.  This isn’t about blame but accountability.  There is enough pain in losing a baby without having to contend with litigation to find answers.

Death involves pain, administration shouldn’t.  Research and personal experience tells us how big an impact people’s behaviours can have on grieving parents years after the loss.  You get one chance to get it right.  One of the loneliest experiences after losing the boys was having to go and register their deaths.  The whole process felt like a transaction and a particularly inconvenient one as if I had somehow robbed the registrar of the fun part of the job.  There was no compassion, barely even any acknowledgement or attempt at consolation.  Sign here, here and go.

Where this loss is cast with stigma and perceptions of inevitability it makes it easier for bad decisions to be made.  It is these bad decisions that may be small on their own (a poor choice of phrasing / misplaced ‘at least’ consolations) but they have lifelong consequences.  These aren’t just the health decisions but administrative ones on how (or if baby ashes are handled and what rights parents have if they choose a shared burial plot for their child.

There is also a need for better care of rainbow pregnancies.  The Rainbow Clinic shows how much can be done to support parents through the anxiety and mixed feelings of pregnancy following loss.  It’s not all rainbows and unicorns.

Much of the work in this is in the medical sphere and this is where much of the coverage is focused but it’s what happens afterwards that also matters.

Access to timely bereavement counselling is essential but is patchy at best meaning that charities and volunteers are left to pick up the pieces.

The widespread stigma and taboo around baby loss mean that many services based on babies are surprisingly ill equipped to deal with what happens when a parent loses their baby.  There should be clear, simple ways to inform the providers of apps and websites about the death of a baby and save the pain of getting those cheery updates on how your baby is doing weeks, months and even years following death.

Awareness of the impact on bereaved parents is key to helping them re-enter the world and particularly the world of work.  The discrimination faced by bereaved parents once sympathy dries up and resentment at disruption and impact on productivity can lead to them never going back adding a further layer of economic anxiety to their pain and grief.  There is some very good Acas and Sands guidance available on this.   Recent Parliamentary debates have shown that we can’t take goodwill for granted

“A father of a baby born at 26 weeks, who died aged three days, was called during his two-week paternity leave by his employer and told that, because his son was dead, there was no child to look after, so he was being treated as absent without leave and asked when he would be returning to work. The man did not work for a small business that was perhaps a bit backward in its approach to human resources; he worked for a large multinational company with more than 20,000 employees in the UK.”

There is so much here, so much here to be aware of it is overwhelming trying to cover in one post in any justice.  If any of these issues have resonated with you, if you want to understand what more can be done to help please take part in baby loss awareness week in whatever way you can.  Tell your story or listen to other people’s stories, ask your MP to raise issues on your behalf during the debate on 10 October, donate, raise money, watch a film, screen a film, sign a petition, wear a pin, anything just make it more than just another awareness week.