#endstillbirths – The missing pieces

There is a lot of activity going around the aim of reducing preventable stillbirth and neonatal death.  It’s been getting press attention in the UK in a way that gives hope that more people are aware of it and its impact on the lives of parents of baby loss.

As a contrast from Dr Elin Raymonds’s account it appears that a high profile #BabyLossSummit in Canada didn’t get the same level of coverage.  This is a pity as the event had some inspiring presentations and helped reinforce the point that the issues surrounding preventable deaths are global and many of them similar to the experience in the UK.

Perinatal and infant loss. Where was the media? Are you listening? #BabyLossSummit @picardonhealth @theresaboyle

— Dr Elin (@Dr_Elin_Raymond) May 17, 2016

I’ve written about measures such as #SavingBabiesLives and it’s all encouraging to know that it is on the agenda and is being treated seriously.  After years being sidelined, bereaved parents’ voices are being heard and each story shared chips away at the stigma and taboo that underpins so many of the issues preventing meaningful action from happening.

As with many complex problems the focus is on prevention but this can often overlook the issues around where prevention has failed and what happens next.

What’s missing?

Mental health

In my summary of all the good work I highlighted the absence of any specific recommendations on mental health support for parents that have lost a child.

But the reports and reviews are seemingly silent on the need for bereavement care and mental health care once bereaved families leave the hospital.

“…60-70% of grieving mothers in HICs reported grief-related depressive symptoms they regarded as clinically significant 1 year after their baby’s death. These symptoms endured for at least 4 years after the loss in about half of the cases”

Much of the work on reducing stillbirth and neonatal death is exactly that.  It is primarily aimed at preventing death from occuring.  What it does not appear to specifically address is how to help parents if and when it does happen and how to help them handle the complex mix of emotions that comes with pregnancy after loss.

This isn’t just about basic human decency and kindness (that should go without saying but the reality often falls short), it’s about the very real consequences to mental health.

“Psychological distress in pregnancy is associated with major adverse outcomes for mother and baby, including increased risk of perinatal mental illness which is acknowledged as a major public health concern.

There is an urgent need for more research, particularly with socially disadvantaged groups, to improve understanding of parents’ needs and enable development of interventions to improve emotional support.”

While guidance from the Royal College of Obstetricians and Gynaecologists acknowledges the potential for psychological distress it provides ‘little practical advice on how professionals should support parents’.  The little advice it does provide seems to be inconsistently applied.

Research back in 2014 reviewed existing studies on parents experiences and expectations of care in stillbirth or neonatal death highlighted the significant impact of previous perinatal loss on subsequent pregnancies:

“The concept of ‘perinatal bereavement’ encapsulating the unique experiences of parents immediately after loss or the death of an infant, was only recently recognised by professionals.

This phenomenon describes a complex emotional response, most commonly expressed through grief, with no specified timeframe”

Need for continued care from perinatal loss to second year after subsequent pregnancy @FdeMontigny #BabyLossSummit @EastGeneral

— Dr Elin (@Dr_Elin_Raymond) May 16, 2016

The elegantly named Marvellous to mediocre: findings of national survey of UK practice and provision of care in pregnancies after stillbirth or neonatal death picked up where the 2014 report left off by filling the evidence gap through its own survey of 138 maternity units and 547 women in the UK.  In contrast, the studies it reviewed in 2014 had sample sizes ranging from 4 to 82 participants.

Of the 138 maternity units that responded 58% of them did not have specific policies, pathways or guidelines on care in subsequent pregnancies.  Where they did:

“monitoring and surveillance appeared to be accorded more emphasis than emotional support and psychological care”

More scans alone are not enough

The MBRRACE report on perinatal death highlighted the importance of monitoring and measuring growth in preventing stillbirths.  This is good and important but without a human element to the technology it remains an incomplete approach to the challenges of pregnancy following loss.

“Units confirmed that limited formal guidance was available to support clinical staff in providing care to women in pregnancy after stillbirth or neonatal death, reflecting the lack of evidence-based care pathways in this area.

Where guidelines existed, the focus was prevention of recurrence through detection of complications rather than psychological well-being and emotional support for parents”

The focus on monitoring doesn’t take into account that for those pregnant after loss, scans are not always reassuring.  Part of this is to do with the ramping up of anxiety as the scan approaches.  It can call to mind the moment etched into the mind, heart and soul forever:

I’m sorry, there’s no heart beat

When handled properly, where health care professionals have taken the time to read the notes, familiarise themselves with the history and acknowledge anxieties as valid then scans and appointments can be briefly reassuring.

This isn’t what the 2014 research found in its review of available papers:

“Although maternity care professionals were perceived as a crucial source of support by parents, the included studies consistently demonstrated that actual contact failed to meet expectations.

Parents frequently encountered professionals who were unaware of their history, through lack of access to / or reading of notes before consultation.

Dismissive attitudes to fears and concerns and insensitive and inappropriate comments sometimes resulted.  These often remained with parents long after the event“

This contrasts heavily against the guidelines:

“The history of stillbirth should be clearly marked in the case record and carers should ensure they read all the notes thoroughly before seeing the woman.”

I know that this doesn’t always happen.

@MAMAAcademy we had a sticker on my notes most professionals tried to ignore it as they didn't know what to say #MatExpHour

— Kerry Limbrick (@kerrylimbrick) April 8, 2016

“At my first NHS scan I became very distressed, the sonograher asked why I was upset and I asked if she had read my notes, she hadn’t so we had to explain our history despite having provided my own Sands stickers and ensured they were on my handheld notes and hospital notes”

Faced with the prospect of this each and every scan it becomes clear why extra scans do not offer reassurance for those pregnant following loss.

Living up to the rhetoric

Coupled with this is a lack of understanding about the need for these scans.  I’ve mentioned before that there is a disconnect between the messages to get checked for reduced fetal movements and how they are treated once they do.

“A bad experience was when a midwife on MDU [maternity day unit] commented that women who receive extra care following a stillbirth such as the planned CTG I had did not medically need to be seen.  The implication was that we were wasting her time which upset me”

The messages around risk are also confused with pressure to not be upfront about risks for fear of scaring expectant parents.

.@mbrrace report: NB of mat units applying stillbirth care bundle & actioning multiple birth guidelines #mbrrace pic.twitter.com/qa5ZagMWcW

— TAMBA (@tamba_twins_mb) May 17, 2016

sadly figures may be accurate but presenting them in this way, for parents having twins this may seem terrifying.

— Julie Horn (@midwife_jem) May 17, 2016

I'd prefer to know the risks upfront so I can back my concerns up in the face of sceptical HCPs.

— Rich (@ShoeboxofM) May 17, 2016

Isolation

This well intentioned coddling is counter productive.  Expectant parents should be aware of the risks and what to look out for in terms of warning signs.  There’s another potential consequence to this shielding, it can lead to self-censorship.

Carol & Lynn: Parents experience emotional and physical isolation following the loss of their child. #BabyLossSummit

— Support Bill 141 (@SupportBill141) May 16, 2016

Part of the reason that expectant parents after loss lean so heavily on health care professionals is that following loss the lack of understanding from family members and friends and unrealistic assumptions about the magic reset button of a new pregnancy leaves them isolated from the support networks on which they would normally rely.

Liza Walter talks about "replacement babies." When her adult sister died, no one told her it's OK, "you can have another." #BabyLossSummit

— Ariel Brewster (@A_Brewster) May 16, 2016

It makes it all the more important that appointments are handled sensitively.

Because baby loss is a traumatic event, parents often remember their care in extreme detail, including insensitive comments #BabyLossSummit

— Ariel Brewster (@A_Brewster) May 16, 2016

It has knock on effects to expectant parents being able to prepare for parenting through the normal route of attending NCT groups.

“Standard antenatal classes were often perceived as problematic; bereaved parents particularly expressed discomfort at the prospect of disclosing previous experiences and discussing their baby’s death.

Concerns related not only to personal impact of reliving severe trauma, but also to potential effects on other parents to be, who were unlikely to have been exposed to poor outcomes.

As a result,, some women admitted they concealed the number of children they had in group discussions and several stopped attending sessions altogether”

 Training

The research and survey identified a need for training all staff in handling bereavement.

“Negative encounters involved professionals across a range of backgrounds (obstretricians, midwives and allied professions) however, junior staff (particularly obstretricians) were mentioned more frequently raising questions around pre-registration education and support for professionals at an early stage of their careers.”

@ShoeboxofM Junior docs barely get anything. Sonographers barely get anything

— Mel Scott (@FinleyFootprint) April 8, 2016

@ShoeboxofM I regularly run study days, as do other orgs… But student midwives often say they get one or 2 sessions in 3rd year.

— Mel Scott (@FinleyFootprint) April 8, 2016

@HilaryPengelly HCPs need support. They do a difficult job.They must be offered training & given time off unit to attend #improvingcare

— Cheryl Titherly (@CherylT261) April 8, 2016

More research

The 2016 research follows on from the 2014 review paper and addresses the identified evidence gap around experiences in the UK.  Its authors note their study’s limitation and highlight the need for further work to identify and understand the specific needs of the groups that are less likely to join support groups or access the charities that helped recruit survey participants.

“This acknowledged limitation and recent data highlighting that Black or Black British, Asian or British Asian women have 50% increased risk of perinatal death compared to the general population emphasise the urgent need to specifically explore the experiences of socially disadvantaged women and other ‘hard to reach’ groups in pregnancy after stillbirth or neonatal death”

There is also a very big question mark around why 46% of stillbirths have ‘unknown causes’.

Credit where it’s due

The report Marvellous to Mediocre as its name suggests doesn’t just cover the bad experiences but examples of sensitive handling, compassion and understanding.

What the good stuff shows is that it doesn’t take much to make a difference.

“Midwife has been excellent, listened to my worries and has been very cautious about certain things, even sending me to hospital for extra scans and monitored blood pressure checks.  Have felt very reassured under her care.”

“Consultant – she seems to care about the risks involved and stress we are under…my previous birth experience was exactly the opposite…”

[Consultant]…Talked about my first baby, remembered her name

Sometimes that’s all it needs.