#babyloss awareness week – Exclusionary language and scary statistics

Does PAIL Language Exclude Grieving Parents? I Think So

No. My first reaction was no. On reading the article, further reflection and in light of the revised disclaimer the answer is still no.  No, Pregancy and Infancy Loss Awareness Month should not have a parallel Child and Baby Loss Awareness Month running alongside it in the misguided intention of inclusivity.

If anything the ham fisted, tone deaf disclaimer made me even angrier.

“It’s not our intention to replace or displace PAIL.”

Intent and outcome rarely coincide. This well meaning whataboutery may not intend to do that but the practical effect is the same. The desire that all events should be inclusive undermines the original objectives whether intended or not.

The reason that there is an awareness month / week is that awareness makes a material difference to prevention in a way that isn’t directly comparable with the loss of an older child. Half of child deaths over the age one are the result of factors that by definition are unlikely to apply to babies.

  • Suicide remains a leading cause of death in young people in the UK, and the number of deaths due to intentional injuries and self-harm have not declined in 30 years
  • After the age of one, injury is the most frequent cause of death; over three quarters of deaths due to injury in the age bracket of 10-18 year olds are related to traffic incidents.

As you can see from the above, the risk of adding a wider group of bereavement categories to a more specific targeted group is that the focus is lost.  Another big issue is that by seeking to be inclusive it inadvertently excludes the “pregnancy” part of pregnancy and infant loss month from the title.

There is nothing to stop an awareness period for child death, nothing at all but it should occupy its own space rather than running in parallel. The stigma and taboo around baby loss makes it hard enough getting media interest and the eyes and ears of policy makers on the subject of baby loss without adding a new ‘exciting’ event at the same time with a much broader set of complex issues.

The article launched with exceptionally poor timing at the beginning of Pregnancy and Infancy Loss Awareness Month has now been removed from Still Standing (but you can see it in cached form).

I’m still irritated and this was exacerbated by another unhelpful intervention. Workplace guidance on handling baby loss was criticised for its use of statistics. Including numbers to show the scale of the issue was seen as alarmist and needlessly distressing. This even went as far as suggesting that the mere knowledge that not all babies survive pregnancy was enough to be anxiety inducing enough to endanger the life of an unborn child.

Incandescent barely describes how angry this made me.

I understand that anxiety can have a negative impact on outcomes but equally so can not acting on that anxiety. This is the bedrock of campaigns by Tommy’s to raise awareness of risk factors and symptoms and empower expectant parents to #AlwaysAsk.

Awareness is critical to improving baby loss prevention. As we have seen from recent studies in Ireland around 70% of people surveyed believe stillbirth was unpreventable even when it is estimated around 60% of babies who die before they are born and close to their due dates might have been saved if basic guidelines in antenatal care had been followed. If deaths are seen as inevitable then why investigate their causes or fund research to prevent them?

Awareness matters. If 56% of those surveyed couldn’t name a risk factor and less than 1% identified reduced fetal movements as a factor it shows there is still a long way to go and that an awareness week is not only justified but necessary to save more lives and spare families the life long pain.

Another claim was that midwives do not tell expectant parents about the possibility of baby loss being more common than they realise. I’m pretty sure they do and midwives are critical to the success of schemes like #AlwaysAsk as they are the ones that will need to act on those concerns.

Expectant parents should be aware that there is a possibility of loss to help prevent that loss from occurring.

Statistics can be scary and upsetting. So is losing a baby. Every one of those statistics is a life lost. Each of those lives impacts on their families and beyond. They are not unnecessary. They matter.

The aim isn’t to scare, it’s to equip people with the information to understand how often this occurs and to prevent it from happening again. The pain and distress of knowledge of loss is as nothing to loss itself.

2 Comments Add yours

  1. christine says:

    👏👏👏👏This post is so spot on in like every way and I wish it could be shared on Still Standing to replace that other article. Interesting that they took it down. Glad they did. I had many of the same thoughts about it as you. Thank you for articulating them!

    Liked by 1 person

    1. ShoeboxofM says:

      That site of all sites should have known better.

      Like

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