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Outside my experience,so it can’t be normal:mainstream media and neonatal death

January 10th, 2012

Dr Petra

This posts tackles the topic of stillbirth and neonatal death and may be triggering to those affected. Information about support services are listed within this post.

On January 4 2012 Mehdi Hasan wrote 10 things you didn’t know about Rick Santorum for the New Statesman. It included information on Santorum’s political views and actions as well as some personal anecdotes about him.

Point 8 stated ‘When his baby Gabriel died at childbirth, Santorum and his wife spent the night in a hospital bed with the body and then took it home, where, joined by their other children, they prayed over it, cuddled with it and welcomed the baby into the family’.

At the time of publication there were discussions on twitter from people that indicated while they had no time for Santorum (and in many cases disliked him intensely) the focus on the loss of his baby seemed inappropriate in the wider context of the piece.

Whether it was the deliberate aim of the piece to suggest Santorum and his family had reacted in an unusual way to the death of their child, or whether it was interpreted in this way by readers, a discussion grew about whether this was a ‘normal’ grief response.

Those who had no experience of losing a baby to stillbirth or neonatal death responded, understandably, with horror at the idea you might want to cuddle your infant or keep them with the rest of your family. People who had been through such an experience asserted it was not unusual (although it may not have been the way they opted to deal with the loss of their baby).

Today, in response to criticisms of the piece, the New Statesman posted Rick Santorum’s Baby – A follow up also by Mehdi Hasan. In the piece Mehdi outlines why he feels criticism of his previous post was unfair. While he suggested on twitter those who had complained were displaying ‘faux outrage’.

Unsurprisingly, more outrage followed.

What interests me is the discussion that followed between Mehdi, myself and others on twitter. This is not intended as an attack on Mehdi, but more a case study in how journalists (like the rest of us) often work within a narrow frame of reference and find it difficult to cope when asked to see the world differently. Which, of course, has major implications for how we understand and talk about our lives.

Mehdi’s main defence of his writing on this topic included that:
- people had misinterpreted what he was saying about how the death of the baby was managed, and he wasn’t poking fun at this
- he was being unfairly criticized for talking about this issue when other writers who had covered it were not targeted in the same way (not quite true as Sarah Ditum shows)
- the story was in the public domain and the Santorum family had even written a book about it, therefore it was perfectly reasonable to include it in the original piece
- he felt dealing with the baby’s death was highly unusual – specifically taking the baby home and introducing Gabriel to the rest of the family
- people he had spoken to agreed they didn’t think the way the Santorum family had behaved with their baby was ‘normal’ or ‘ordinary’

In the heated discussions that followed GP @PeteDeveson calmly tried to explain why people were criticizing Mehdi. He stated:

‘I don’t blame you or your subeditor for not being aware that it’s not an unusual behaviour after stillbirth

However, you have been made aware that your article upset some parents who have had similar experiences.

The classy response to this would be to apologise, not characterise it as “faux-outrage”’.

Mehdi’s response was:
@ns_mehdihasan @PeteDeveson On a side note: not unusual? Still waiting for some stats/surveys/evidence for this claim. Am genuinely interested. Educate me.

After Pete provided information from a stillbirth charity, Mehdi said it was interesting but ‘still want stats’. Specifically (it seemed) about how common it was to grieve for a baby in the way the Santorums had, and to take a baby home to be with the wider family.

This is not an unusual reaction from journalists when criticized (or for that matter most academics, medics, skeptics and so on). However there are a number of problems with this approach.

The first is asking to be educated without really wanting to be informed. I may be wrong about Mehdi (and I hope I am) but in my experience journalists who ask to be educated want you to go away and stop bothering them and hope getting you to find evidence will shut you up. If you provide said evidence you usually find they’ll give a lukewarm thanks or simply ignore you. But you will see no sign that anything you have shared with them makes any difference to their practice.

Myself and others did share information with Mehdi so I am hoping this does educate him as he has asked. I’m also sharing this information here as it may be relevant to anyone who is unfamiliar with grieving processes after the loss of a baby (and may be of help to those who have lost a baby or are working in the healthcare/therapy professions).

The second problem is how ‘evidence’ is conceptualized – as ‘stats/surveys/evidence’. While it’s not unreasonable to ask for this, in many cases such data is not always available, nor appropriate. Not just in relation to research on how people deal with bereavement and infant loss, but on research generally. You may find data on how many parents select to take a baby home with them from a survey (or more likely an audit), but it won’t tell you how parents felt, how they coped, what they found helpful or not. You would need qualitative research for that.

And the request for ‘statistics’ is often meaningless if people cannot interpret said data or if said data doesn’t exist for very good reason. I have not found evidence on the prevalence of parents taking their baby home versus staying in hospital following neonatal death. That is not to say such data exists (and if you know if such data let me know and I will add it to this post). But it may not be something routinely collected within healthcare trusts. Even if it is routinely collected it may not be recorded universally across regions making it difficult to obtain reliable information.

Even with ‘statistics’ available, does it really make a difference? If some parents decide to do something to help their grieving process which is not what most parents do, does that indicate something is abnormal about them – or simply that they have decided to grieve in a particular way? Who gets to make this judgement?

As @DrRanj astutely pointed out during this discussion “What is the correct way to grieve? Whatever/whenever/however you need to deal with your pain”.

In fact there is evidence on coping with stillbirth and neonatal death.

Some of this comes through support organisations such as

SANDS
FSID
Winston’s Wish
Child Bereavement Charity
Miscarriage Association

Other evidence can be found in academic research (of which there is a lot in this area, much of it qualitative, focusing on how people grieve and what helps them).

From this we know it is standard practice that following the death of a baby parents, supported by healthcare staff and therapists, may want to:
- Name their baby (if they haven’t already done so)
- Bathe, oil, massage and dress baby
- Kiss,cuddle,sing,talk to and sleep near baby
- Take photos of baby
- Make other mementos such as a hand or footprint
- Have friends and family (including siblings and other young relatives) visit the baby
- Wrapping baby in a blanket the family will later keep

Not all of these things appeal to all parents and families and it is vital to stress the importance of choice and decision making which must be parent led. Well intentioned healthcare professionals may impose some of these activities which do not directly appeal to parents because they have been told they are ‘good practice’. A Cochrane Review on Support for mothers, fathers and families after perinatal death states:
“However, recently there has been an alert sounded that such practices have become prescriptive and ‘routine’ in check lists and ‘do’s and don’ts’ and, in fact, may be failing to offer meaningful care to bereaved families (Lang 2005). A recent review showed that parents perceive many healthcare provider behaviours to be thoughtless or insensitive (Gold 2007)”.

This can be particularly an issue where parents may not want to see the baby or may prefer other services to deal with funeral arrangements. And it is worth noting, depending on circumstances, some parents may find interacting with their baby distressing and might require long term support and counseling as a result. Particularly in cases where parents have PTSD as a result of coping with their experience.

While we may not have exact figures on how many of these activities are undertaken by how many families, we do know they are widely recognized and supported ways that people might choose to interact with their baby, even if they do not appeal to all parents and may not be suitable for everyone.

What about the concept of taking baby home, which the Santorum family did with Gabriel, and which Mehdi and some others apparently find difficult to believe?

Well again it is not unusual. Which is why hospitals have cold cots. A ‘cold cot’ enables a baby to remain in a hospital or be taken home (or remain in the home if baby died there) until their funeral. A baby may be in a cold cot for a few hours to several days, depending on religious requirements, family preference or other funeral arrangements. (If you want more information about using cold cots within healthcare training is available here).

For those who don’t have children, or who have children and find it difficult to contemplate how they would deal with the loss of their child, thinking about ways of being with a baby after it has died might seem mawkish, horrific, or distressing.

However, for parents and families such rituals or opportunities may be exactly what they want or need at the time, and in the long term help them come to terms with the loss of their baby.

It is understandable that, when faced with something we do not comprehend or hope we never have to face, that we react with incredulity. It is also understandable that if we are challenged for holding such a viewpoint that we react defensively and demand others prove us wrong, while not really listening to their feedback.

However, it is important journalists do listen. Miscarriage, stillbirth and neonatal death remain taboo topics within our culture. Not necessarily because those who have experienced loss want not to discuss it (although this can be the case) but because others around us react with embarrassment or discomfort. The media could do so much to challenge stigma in this area or campaign to improve care and support, yet rarely does so. (An exception is Mumsnet’s Campaign for better miscarriage care and treatment).

Instead we are faced with soap operas, dramas and movies that represent bereaved parents as mentally unbalanced (and a risk to other babies), and news coverage or features that either airbrush lost babies out of conversations, or only allow parents and practitioners to discuss stillbirth and neonatal death in particular predictable and sanitized ways. Our anxieties about neonatal death can mean we dismiss valid experiences, or not fully research an area. Relying instead on stereotypes or simply not investigating an area in any depth.

Journalists and others who have perhaps not experienced the loss of a baby may well find how others grieve for or remember their infants as abnormal. But if we allowed ourselves to listen more to their experiences we discover their actions are not unusual and are perfectly understandable. That’s why hearing from bereaved parents is becoming a recognized part of paediatric training. Giving parents and families the opportunity to talk allows them to recognise, celebrate and remember their babies. Not rendering them invisible just to keep the rest of us in our comfort zones.

Update 25/03/14 Dr Jen Gunter has a moving and related essay “It took 32 days to decide what to do with my son’s body. On grief, ethics,and death”

The Lancet have a guide about stillbirth for practitioners along with a series of reports on the issue, plus a very moving photo essay with parents and their babies “Moments held – photographing perinatal loss”

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