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A short story about death…

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“Someone will be along in a minute to explain what is happening.”

Then a minute became two, three, five… until fifteen silent minutes had passed, each one seemingly longer than the last. Then footsteps…

It must have taken her an hour to cross the floor, or maybe just 30 seconds, I don’t know. I was no longer there.

“I’m sorry, Mr. Tagg, I’ve got some bad news for you….Despite our best efforts, we were unable….”

Her words disappeared and floated away with our dreams, and I was lost

That was how I had found out that my daughter had died. It was a tragic accident, the result of an unexpected antepartum haemorrhage and an unsuccessful neonatal resuscitation. Something happened that day that fundamentally changed me, not just as a person but as a doctor.

Flashbulb memories

Memory is imprecise – even in times of extreme emotion when it feels like every frame is burnt into your retina, like the afterimage of a photograph. Psychologists have heavily studied these flashbulb memories, and Malcolm Gladwell gives an easy-to-understand rundown in this episode of Revisionist History. What is most fascinating to me is that they are not always correct. So, what does that mean for my recollection of the events that August?

The rarity of neonatal resuscitation

According to the Australian Bureau of Statistics, a baby is born every 1 minute 42 seconds. That equates to around 8000 babies a day. Unfortunately, 7.2 per 1000 babies are stillborn, and there are 2.4 neonatal deaths per 1000 live births. So, in the whole of Australia, there are up to 19 neonatal deaths every single day.*

Most of us attend a delivery and never expect to resuscitate an infant. When we do, a waft of oxygen is often all that is required. A Dutch study showed that around 2.6% of all births via elective caesarean required supplemental oxygen, around 1% required bag-valve-mask ventilation of some sort, and only 0.1% required any more intensive resuscitation. The rates are much higher in lower/middle-income countries.

Because they are such a rare event, most doctors never expect to have to deal with a fatal outcome. Just as most emergency physicians obsess over the rarest of events, the surgical airway, perhaps those of us who may potentially be present at birth, should be prepared to do what is necessary.

*A neonatal death is one that occurs within 28 days of birth

Absence does not make the heart grow fonder

A lot has already been written about the benefits and challenges of parental presence during the management of a critically ill child. To get you up to speed, then read this post from Natalie May over on St Emlyns. The Resuscitation Council (UK) seems to think it is a good idea, and most literature focuses on parental presence in either the ICU or ED setting and in an older cohort.

An exploratory interview study by Harvey and Pattison identified four key concerns surrounding the presence of the father during neonatal resuscitation in the delivery suite.

  • Whose job is it to support them?
  • What should they say or do?
  • The importance of teamwork
  • Impact on the healthcare practitioner

Think about the last time you did any neonatal life support training. No doubt you focussed on the core clinical skills – airway, breathing, circulation – with little or no mention of dealing with the parents.

Medicine has moved on from beneficial paternalism to a more patient/parent-centred approach. It can be a hard decision – stay or go – but it doesn’t have to be the clinician’s choice.

Being present at a neonatal resuscitation can also be distressing for the staff involved, so one can understand how medical teams might want to shield parents from the hurt. There is concern that caregivers might interfere or get in the way of treatment. A skilled guide, such as a social worker or trained nurse, can help explain what is happening and translate complex medical terms into plain English.

‘They’ll always remember how you made them feel”

In a time when infant death was a common occurrence, the prevailing thought was that grief could be avoided by preventing mothers from seeing their stillborn children. Psychologists would later theorize that an attachment bond had not been formed, so whisking the baby away without ceremony would cause no harm. By the 1970s, this theory had been thrown out the window, and grieving parents were offered the opportunity to see their children. Perhaps now the attachment bond is formed even earlier, through the use of antenatal screening, regular ultrasound scans and midwife visits, making grief even more palpable.

The traditional (if flawed) Kubler-Ross model of grief

There will always be questions after an unexpected death – some can be answered, and some can never be. But is important for parents to have the opportunity to ask. A qualitative study by Bakhbahki and colleagues in the South West of England identified several parental concerns centred around transparency, flexibility, inclusivity, and positivity.

We want to know that there is a perinatal mortality review process and how it works. As one of the interviewees stated, they wanted to know, “this is how your child died and this is how we investigate it“. Parents wanted to know that this process was multidisciplinary involving not just neonatologists or paediatricians but also the obstetricians to identify any factors that may future tragic events.

We want our children to be treated like any child should be treated – with respect – regardless of whether they are alive or dead.

The most distressing thing for me was knowing that she had been stripped of her blanket and photographed before I even had the chance to hold her.”

E.T. – a bereaved mother

There is a stigma attached to the death of a child. Society, whether it means to or not, sees the death of a child as a failure on the part of the mother. She must have done something wrong in pregnancy. She must have broken the rules. Then, these women are isolated from other newborns and their parents to the extent that they may even receive sub-optimal care.

An alternate view

It has been 8 years now, and I have progressed far enough in my career to be the one bearing bad news. As an emergency physician who deals with a lot of sick and critically unwell adults, I have gone out of my way to seek formal training on breaking bad news. Specialities, such as obstetrics and paediatrics, are not exposed to death and dying on such a routine basis, and very few have received formal training.

So what could be done better?

While being an emotionally distant automaton may afford some protection for the clinician, those breaking bad news must be humans first, doctors second. I’ve written before about the power of kindness, and this is one of those moments when we need to stop, look, listen and think. The death of a child, any child, is a devastating event and should be acknowledged as such.

A short story about life

As we played in the courtyard by the post-natal ward, I heard that click that portended the overhead speaker coming to life.

“Code Blue Neonatal. Code Blue Neonatal – 4 south”

There must have been 24 newborns on that ward, but in that split second, I knew the call was for mine.

We walked around the corner to our room, and there was Rosie, grey, not breathing, a skilled hand delicately applying a face mask. My wife and eldest were in tears, standing next to her. As the team grew, room was made for me to come to the front and become a part of it.

To lose one child at birth is a tragedy. To lose two……

My blog posts are often inspired by real life, with dates and names changed. When Rosie was born, I already had a series on normal neonates in mind. I would take photographic records of every poo-stained nappy, every normal neonatal thing I could find. But her respiratory arrest halted that. Now, a couple of years later, I can take a step back and reflect on some of the most (clinically) important aspects of that day.

Quiet is calm

I used to think that a leader was the person with the loudest voice, the one barking orders. This is probably a holdover from growing up under the shadow of a father in the armed forces. I have been to many arrests – both adult and paediatric – and have found that those that are the quietest are the best run.

In her book Quiet, Susan Cain talks about the power of introverts and about how they can be team leaders and effective ones at that. So how does that happen? Introverts tend to listen more than they speak, observing their environment and drawing on all of the verbal and non-verbal cues presented to them. Because of this, they tend to hear what others say, reflect on it, and use that information as needed. A calm resuscitation is not the product of one person but the whole team, sharing a single mental model. The team leader allows others to shine when needed and takes their ego out of the equation. How many times have you been at a resus when the doctor in charge of the airway says, “I just need one more try” as the patient continues to desaturate?

Noise is just wasted mental energy.

You will be remembered

I wrote last time about the importance of how you make people feel. I think it is such an important point that it is worth reiterating. I don’t know how many patients I have seen since I qualified, but I do know that, to them, their interaction with me was possibly one of the most important things that happened to them that day. To me, they may just be another patient with chest pain or another snuffly child with mild bronchiolitis that I want to send home, but to them or their parents, I am something else. I am the voice of authority, the voice of reason, the voice of validation, the voice of kindness, the voice of compassion – and they will remember that.

After an intense round of tests in the NICU (including the LP that I stayed for) it was time for the hard-working dayshift to hand over to the team that would be taking care of the unit overnight.  My wife was catching some much-needed rest, and I sat beside the crib. As the team shuffled by and formed a long line behind the small pink bundle the neonatal fellow gave handover.

“And this is her father, Andrew”

“We’ve met before actually. It was about five years ago. You were the consultant that told me my first daughter had died.”

She visibly reeled before averting her eyes to be led to the next bed.

Praise where praise is due

In medicine, we are used to feedback – negative feedback usually.  It’s that look from the department director as she calls you into the office, “You remember that patient….” that automatically makes us wonder what we have missed. But it doesn’t always have to be like that.  Adrian Plunkett and the Learning from Excellence movement have led to an increase in reporting of positively deviant behaviour. Still, it has yet to make much of an impact over here in Australia.

What I think is more powerful, though, is hearing from the patients and parents themselves. I made it a point, once the stress levels had died down somewhat, to write a thank you to the team via the hospital’s CEO. I felt it important that not only did they feel valued but that the executive also knew that they were valued. Next time you or one of your loved ones are a patient, try it.

Selected References

The rarity of neonatal resuscitation

*De Luca R, Boulvain M, Irion O, Berner M, Pfister RE. Incidence of early neonatal mortality and morbidity after late-preterm and term cesarean delivery. Pediatrics. 2009 Jun 1;123(6):e1064-71.

Kerber KJ, Mathai M, Lewis G, Flenady V, Erwich JJ, Segun T, Aliganyira P, Abdelmegeid A, Allanson E, Roos N, Rhoda N. Counting every stillbirth and neonatal death through mortality audit to improve quality of care for every pregnant woman and her baby. BMC pregnancy and childbirth. 2015 Dec;15(2):S9.

Knight M, Draper ES, Kurinczuk JJ. Key messages from the UK Perinatal Confidential Enquiry into term, singleton, intrapartum stillbirth and intrapartum-related neonatal death 2017.

Lawn JE, Lee AC, Kinney M, Sibley L, Carlo WA, Paul VK, Pattinson R, Darmstadt GL. Two million intrapartum‐related stillbirths and neonatal deaths: where, why, and what can be done?. International Journal of Gynecology & Obstetrics. 2009 Oct 1;107(Supplement):S5-19.

Lee AC, Cousens S, Wall SN, Niermeyer S, Darmstadt GL, Carlo WA, Keenan WJ, Bhutta ZA, Gill C, Lawn JE. Neonatal resuscitation and immediate newborn assessment and stimulation for the prevention of neonatal deaths: a systematic review, meta-analysis and Delphi estimation of mortality effect. BMC public health. 2011 Dec;11(3):S12.

Richmond S, Wyllie J. European resuscitation council guidelines for resuscitation 2010 section 7. Resuscitation of babies at birth. Resuscitation. 2010 Oct 1;81(10):1389-99.

Wilmink FA, Hukkelhoven CW, Lunshof S, Mol BW, van der Post JA, Papatsonis DN. Neonatal outcome following elective cesarean section beyond 37 weeks of gestation: a 7-year retrospective analysis of a national registry. American journal of obstetrics and gynecology. 2010 Mar 1;202(3):250-e1.

Wyllie J, Bruinenberg J, Roehr CC, Rüdiger M, Trevisanuto D, Urlesberger B. European Resuscitation Council Guidelines for Resuscitation 2015: Section 7. Resuscitation and support of transition of babies at birth. Resuscitation. 2015 Oct 1;95:249-63.

Absence does not make the heart grow fonder

Boie ET, Moore GP, Brummett C, Nelson DR. Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents. Annals of emergency medicine. 1999 Jul 1;34(1):70-4. Cacciatore J, Rådestad I, Frederik Frøen J. Effects of contact with stillborn babies on maternal anxiety and depression. Birth. 2008 Dec;35(4):313-20.

Fulbrook P, Latour JM, Albarran JW. Paediatric critical care nurses’ attitudes and experiences of parental presence during cardiopulmonary resuscitation: a European survey. International journal of nursing studies. 2007 Sep 1;44(7):1238-49.

Harvey ME, Pattison HM. The impact of a father’s presence during newborn resuscitation: a qualitative interview study with healthcare professionals. BMJ open. 2013 Jan 1;3(3):e002547.

Nederstigt I, Van Tol D. Parental presence during resuscitation. Resuscitation. 2008 May 1;77:S61.

Offord RJ. Should relatives of patients with cardiac arrest be invited to be present during cardiopulmonary resuscitation?. Intensive and Critical Care Nursing. 1998 Dec 1;14(6):288-93.

Sawyer A, Ayers S, Bertullies S, Thomas M, Weeks AD, Yoxall CW, Duley L. Providing immediate neonatal care and resuscitation at birth beside the mother: parents’ views, a qualitative study. BMJ open. 2015 Sep 1;5(9):e008495.

Tripon C, Defossez G, Ragot S, Ghazali A, Boureau-Voultoury A, Scépi M, Oriot D. Parental presence during cardiopulmonary resuscitation of children: the experience, opinions and moral positions of emergency teams in France. Archives of disease in childhood. 2014 Jan 6:archdischild-2013.

‘They’ll always remember how you made them feel”

Badenhorst W, Riches S, Turton P, Hughes P. The psychological effects of stillbirth and neonatal death on fathers: Systematic review. Journal of Psychosomatic Obstetrics & Gynecology. 2006 Jan 1;27(4):245-56.

Bakhbakhi D, Siassakos D, Burden C, Jones F, Yoward F, Redshaw M, Murphy S, Storey C. Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study). BMC pregnancy and childbirth. 2017 Dec;17(1):333. Bonanno GA, Kaltman S. The varieties of grief experience. Clinical psychology review. 2001 Jul 1;21(5):705-34.

Boyle FM, Vance JC, Najman JM, Thearle MJ. The mental health impact of stillbirth, neonatal death or SIDS: prevalence and patterns of distress among mothers. Social science & medicine. 1996 Oct 1;43(8):1273-82.

Flenady V, Boyle F, Koopmans L, Wilson T, Stones W, Cacciatore J. Meeting the needs of parents after a stillbirth or neonatal death. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Sep;121:137-40.

Flenady V, King J, Charles A, Gardener G, Ellwood D, Day K, et al.PSANZ Clinical practice guideline for perinatal mortality. Perinatal Mortality Group https:// www.psanzpnmsig.org.au. Perinatal Society of Australia and New Zealand, April 2009; Vol. Version 2.2.

Koopmans L, Wilson T, Cacciatore J, Flenady V. Support for mothers, fathers and families after perinatal death. Cochrane database of systematic reviews. 2013(6).

Mills TA, Ricklesford C, Cooke A, Heazell AE, Whitworth M, Lavender T. Parents’ experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Jul 1;121(8):943-50.

Nuzum D, Meaney S, O’donoghue K. The impact of stillbirth on consultant obstetrician gynaecologists: a qualitative study. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Jul 1;121(8):1020-8.

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