#endstillbirths: Taking on stigma and taboo

The main theme underpinning all recent Lancet / International Stillbirth Alliance research series and call to action is the all pervasive and deeply corrosive twin effect of stigma and taboo.

The societal drive to avoid that most uncomfortable of subjects has wider impact than many would like to admit or acknowledge.  Like the fabled road to Hell the terrible twins are not born of malice or deliberate cruelty.

Many of the willing agents believe that they are doing it with the best of intentions.  In some cases they may believe that by seeking to minimise exposure to the horrors of stillbirth and miscarriage that they are helping the parents on the right path to acceptance and that mythic state of closure so they get over it and move on.

Sometimes the intent maybe to shield the wider community from the horror and from having to face difficult questions about mortality (or their failures of compassion and kindness).

The intentions are good.  Intent and outcome rarely coincide.  The intentions are based on a lie.  They inflict needless cruelty upon the bereaved already dazed by their loss.

By confronting stigma and taboo we can show the true extent of the impact of not talking or allowing people to talk about stillbirth.  We can demonstrate that it affects families, relationships, grieving and ultimately prevention of stillbirth itself.

Families

In times of crisis and hardship most people will seek support and comfort from their family.  Even for those with supportive relations the experiences are far from being universally positive.

Bereaved parents may find that support from even their most enthusiatic cheerleaders has a much shorter shelf life than they would hope to have.  Unconditional love may suddenly feel as though its status has been downgraded and be marked by ‘unrealistic, unhelpful expectations of recovery’.

One form that stigma and taboo is the ultimate denial that the stillborn ever existed calling into question a parent’s sense of identity as a mother or father.

“One participant recounted that when she told her sister she was not sure if she was ready for Mother’s Day rituals, her sister replied:

Well, you’re not a mother, you have to give birth first” (USA)

“Each women struggled with her identity.  Although each felt she was a mother, she was a mother without a child, and did not have tangible evidence of her motherhood” (Australia)

“…men in the study questioned their identity uncertain to their right to the term father”

The stigma around stillbirth and the expectations that come with it around the appropriate expression of grief have wider effects.

“This sense of constrained grieving caused by social discomfort and taboo extended to husbands and grandparents who were not expected to grieve the loss of a stillborn baby beyond feeling some transient sense of disappointment or sadness for their wife or daughter” (USA)

Even across different cultures the stigma and taboos attached to grief have the effect of imposing unrealistic, unhelpful and divisive models of grief on parents with little care or understanding of the potential consequences.

Relationships

It is those wildly differing expectations of how a mother and father should grieve that drives isolation and puts unnecessary strain on already vulnerable set of people struggling to make sense of their loss and the maelstrom of emotions that follows.

Here are two quotes to illustrate:

“According to Taiwan’s culture talking about death is a tabooo subject and these mothers often deal with their grief privately”

“Some women felt that their husbands did not show any sadness and were impatient with them, they felt their relationship had changed.  Stillbirth had created a distance between them.”

This has echoes of the previous quote about expectations that fathers should only feel some sort of ‘transient disappointment or sadness’.  In these cases it is not necessarily the stillbirth that has created a distance between mother and father but stigma and taboo about talking about death and the expectations of gender appropriate grieving.

The fear of being marked as different can lead to self isolation and worsening depressive symptoms.  I’ve heard stories of bereaved parents that have seen friends cross the street to avoid them and any awkward conversations.  Faced with that it’s no surprise that some parents might just skip all that and just choose to stay at home.  I used to know how well the day had gone by seeing if the blinds were up or down by the time I got home.

There can be a closeness following loss out of the shared experience but there’s also a risk of cabin fever with two people, hungry, tired and driven close to madness by grief stuck in close proximity for too long.  Couple that with different ways of grieving and expressing grief and it could get very messy.

Grieving

Stigma comes from many places and underpins the decisions that can forever shape the way in which parents grieve.  This is why it is so important that those involved with the birth have training and understanding of the consequences of those actions.

The term disenfranchised grief describes where people feel that their grief was not legitimised or accepted by health professionals, family or society.  If you feel that a stillborn babies life is less important than a live birth then you may deny them the chance to see and hold their baby and take mementos.  The difference between statistics for these gestures in high and low/middle income countries is stark and shocking.

Contact with baby (35% in LMICs Vs. 94% in HICs)

Opportunity to see and hold baby (42% in LMICs Vs. 95% in HICs).

Make memories (35% in LMICs Vs. 87% in HICs)

Name their babies (39% in LMICs Vs. 83% in HICs)

There are times when I feel that our sons life and death is abstract but we do have photos and mementos to remember them by and we did get to spend time with them.  I could not imagine having the only thing left of them that we have stripped away from us.

Stillbirth prevention

We have already seen in the summary of the summary that lack of information on stillbirths hampers efforts to influence the necessary political and civic leaders to take action.

This applies not only to data on the number and causes of stillbirth but also to the wider economic costs. If you want to convince people to spend money to save lives then you need to be able to demonstrate that doing so will save money in the long run.

Best estimates available show that a relatively modest sum of spending on prevention ($2000) is enough to generate more than a three-fold return on investment. The economic costs of a stillbirth to a health service far outstrip those of a healthy live birth in terms of more costly interventions and subsequent costs during the next pregnancy and psychological support.

There is also the wider economic cost of the lasting effects of stillbirth on the parents in terms of reduced earnings and lost productivity for those that are able to return to work. Again these wider costs are at best estimates.

It seems bizarre that the highly emotive issue of dead babies is not enough itself to offer a compelling and convincing reason for taking action but as we have seen, cultural taboos and stigma work their subtle dark magic to shuffle these difficult matters away in favour of, if not happier, less morbid topics. These aren’t the type of babies most politicians would be happy to have photos with.

Political leaders and influencers will look to experts and armies of wonks when deciding where to spend money and focus activity and resources. If you want to influence wonks you need to speak wonk and provide the information they need to make recommendations.

This is why it is important to look at the hard numbers and gather evidence in addition to the endless parade of incomprehensible tales of grief, loss, rage and sorrow. Numbers can seem a comfort in comparison but these numbers are hard to provide if few are counting the cost.

Call to action

But even with more money to support the cost of the interventions to prevent stillbirths it means little if those that do lose their children still suffer the indignities and cruelties of stigma, taboo and the isolation that they bring from partner, family and community.  There need to be bigger discussions on these cultural taboos.  Culture is not a fixed point in time.  It shifts, there are variations and it can change.

We need to start asking questions of what benefit these taboos have.  If all they do is harm then why do we protect them and guard them from challenge and change?  The answer, ‘that’s how it has always been done’ is not good enough.  Memory distorts perception and so much of what we think as always having been the case is not necessarily so.

We tell our stories.  We speak the names of our children.  We include them in family histories both written and oral.  We make sure that any unwilling member of our club is welcomed, supported and acknowledged.  We join and form support groups.  We share our stories with the people that make the decisions both politicial and medical so they know the value (in all senses of the word) of our children’s lives and that their terrible loss was not fate, was not inevitable and it is within their power to make sure that it doesn’t happen again.  By listening and taking action on the call to action more deaths can be prevented and where they can’t those that suffer can grieve in dignity without fear of shame, reprisal or judgement.