Fatherhood, Faeces and Fear… a Rural Doctor’s story
Hi All, this is a written version of the talk I gave at Don’t Forget the Bubbles in Brisbane today:
I would like to tell you a story.
Let me take you back to spring, 2009. Exciting times. My wife, Zivana and I are expecting our first child in a few weeks. We spent long evenings walking Cable Beach making plans for our new life ahead. As we wander each day we passed other young Mums-to-be. Some of them are our patients. We often see Rachael. Sometimes we stop, chat and compare burgeoning bumps. This is the story of Rachael, her family and how I became entwined in their lives.
One night I was on a late shift, the solo doctor in our busy little hospital. There I was: repairing the revellers and validating the viraemic. Around sundown I got a courtesy call from the midwives. The primip that they admitted earlier is “fully” – they will call if they need help.
An hour later, an alarm goes off. MET CALL, LABOUR WARD! I drop my needle-holders and run to the ward.
The next five minutes seem to last a week.
I push aside the curtains, I see two midwives leaning on a screaming woman’s naked thighs, terror on their faces. They part to reveal a grey- blue head sucking in and out of the perineum. Thick, dark brown meconium is dripping from the babe’s uncrying mouth. “We have lost the pulse!” Time slows.
I bark instructions:
“Get those legs back!”
It works. With the next push I manage to wrench a limp, grey lifeless boy from his mother. It is only now that I look up and see that terrified mother’s face, it is Rachael. There is no time to pause.
On the Resuscitation cot instinct takes over, I bag for a moment, forgetting the algorithm. I cannot move air. We start compressions as we prepare to intubate. The cords are covered in thick, granular mec. We suction, then tube again. On the second try he coughs. We have a pulse.
“Is he OK?” asks Rachael from the bed.
“Yes, he’s doing better…” I don’t know what else to say.
He was down so long.
Rachael is bleeding. Another protocol springs to the front of my mind. This time I get it right. Drip, drugs, rub and sew. Help arrives, the trickle slows.
The next few hours are a blur of phone calls, procedures and hoping. We re-intubate thrice as the tubes clog. We take turns manually ventilating, the pressures are preposterous. He shows no signs of fight. “Persistent foetal circulation” – it sounds like a good thing, but is not. We all know that he is gone.
A kind Neonatologist in a hospital a thousand miles away provides an escape. She graciously accepts what is a long, expensive and futile transfer if “that is what the family wants…”
At one in the morning I put this question to Rachael and her husband Alan. They are exhausted and uncomprehending. The proposition is impossible to them. It feels unreasonable to even ask that question. There is no protocol here. I sugar-coat the truth, I hide behind hope and take the easy path.
They want to go, they want to give him any chance, no matter how small. This means that we separate them. Only one can go onboard the NETS plane.
At four o’clock the retrieval team arrives and package him up. We talk only about the numbers and neurology.
I am recalled to the labour ward. Another birth. This one is simple, fast and joyous. I am not really required to be there, but it feels good. I suspect the old midwife that called me knew. She sensed my need for normalcy? I know she had been here before. When I return Rachael has departed.
Not long after arriving in a NICU on the other side of the continent Rachael’s son died. Rachael is alone. Alan is somewhere mid-flight, praying. I feel that I made the wrong choice. I would never want this for my family.
Three weeks later I became a father, Julius is born, he is perfect. Home is bliss, an idyllic island of three. A month away from the hospital is rejuvenating. The memories of that night blur within the perpetual routine of sleep, wake, feed & sleep.
On returning to work I face an “incident review”. The experts focus on the resuscitation. They focus on the moments that I bagged before suctioning. I breached the algorithm, my error is writ large. Their criticism could never be as stringent as my own.
No mention is made of the decision to transfer, my inadequate counselling and the despair that Rachael endured. We were dealt a bad hand, but I know that I played it poorly. Self-loathing and rumination fill many sleepless nights.
One morning, a month later, Zivana asks me to buy breast pads. I wander the supermarket rows between ‘baby care’ and ‘feminine hygiene’ (where do they stock these things?) My brain floats in a sleep-deprived haze… until I see Rachael.
We make eye contact before she collapses to the ground in a flood of tears. I try to comfort her as she wails but it was clear that my mere presence is painful. A passing store clerk misreads the scene and confronts me:-
“What are you doing?”, “What did you say to her?” He shoves me away…
Guilt and shame overwhelm me. All I can do was apologise and leave.
Fast forward a year.
In the winter of 2011 I was on paternity leave. This is an unusual thing for a rural, male doctor to do! However, once my second son, Darcy was ready, Zivana returned to practice and I became the home keeper. Some of my male colleagues joked about my “slacking off” at home- if only it were true. I would prefer a roomful of STEMIs over two tikes any day!
One Tuesday I was grocery shopping in the local Supermarket – perched in the trolley Julius held the shopping list, whilst his new brother hung in the Baby Bjorn. I was feeling like an imposter. I was handling my domestic duties despite my own deep sense of inadequacy. Playing it cool, I nodded at the other young Mums in the produce section as I loaded my cart with fruit and veggies.
For a fleeting moment I heard Zivana’s voice in my mind: “always remember the nappy bag when you go out…”. The most basic parent protocol! Ah, bugger, I forgot it, not to worry. As I advanced into the dairy section I nuzzled the little guy – he garbled with delight. This job was EASY!
It was then I noticed the smell. The unmistakable sweet, stink of fresh faeces. In denial I pushed forward, into the cheese section. Only then did I look down to see the chocolate, gooey liquid streaming from both sides of Julius’s jumpsuit. This was a major movement and a poorly applied nappy! Before I could jump into action it had dripped all over the produce below. I heard Zivana’s voice again! As always, she was right!
So here I stood. In the middle of the supermarket with a trolley full of foul fondue with two small boys. What was I to do?
For a moment I contemplated quietly pushing the cart into a corner and fleeing. But, no. I am a very recognisable member of the community, that was simply not on. Thinking fast I headed off to the baby aisle to get supplies. Right there I went to work: change the boy, rebag the groceries and clean down the trolley.
Moments later the Manager arrived. It was Rachael. She smiled, automatic tears welled in her eyes. She took a step, then paused and patted a pregnant bump over her belt. I smile, tears well in my eyes. In that moment my troubles faded away. We both sensed a great unburdening. We then set to work sorting out my predicament.
Six months later. I am in Anaesthetic clinic. My patient is Rachael, she is due for her elective Caesar tomorrow. We all feel it – the room is full of unspoken fears.
“Are you sure you want me as your Anaesthetist?” I offer again.
“Absolutely!”, Rachael and Alan agree.
Our relationship has been intense. Time has softened things, however, tomorrow was going to be special. A chance to start again, a literal rebirth.
The theatre was unusually quiet as I performed Rachael’s spinal. The pervasive silence continued until her womb was incised and the clear, fresh amnion drained. After a few tense moments the screams of a new life filled the room. I had never felt so privileged to share in a moment. We all wept together. Serena was born, and she was perfect.
In the years that followed Rachael and I moved through our busy lives in parallel: kindergarten drop-offs, supermarket and late night gym encounters. Rachael had another daughter, we had a third boy. We were never close, but shared milestones and memories.
Then one afternoon in late in 2016, I saw Serena’s name appear on the ED triage list.
“5 year old girl, fell at school ? Elbow fracture?”
Serena was tough. She told me she was playing chasey and bumped into her friend, she did not fall. Her arm was swollen and she couldn’t lift it. Rachael and I joked as I walked them through to Radiology.
I spent many minutes staring at these images. The moth-eaten, friable bone. I called the Radiologist for an opinion: “most likely osteosarcoma….”
I needed a plan. There was no way I could tell Rachael this news without knowing – “what next?”
I called the Paeds hospital and spoke to the “Bone Tumour Fellow” ( I never knew that such a position existed!) From 2000 km away he reviewed the X-rays. He was curt and condescending.
“Get a CT. We will see her in three weeks.”
Three weeks! That seemed like an eternity. I pleaded to hasten the process.
“Does she have any other problems?” he asks.
“No… she is perfect.”
The Fellow did not understand, how could he?
I broke the news to Rachael and Alan. We wept again.
Three weeks in perdition.
They had many questions, few that I could answer.
What about school?
Should we move to Perth?
What about Alan’s business?
Will she need chemo? Will she lose her hair?
Will she lose her arm?
Will she die?
What would you do?
I gave Rachael my mobile number.
In those weeks we spoke for hours. Rachael shared her fears, her Google searches and her frustration. I listened, I rejected bad science and I tried to maintain hope. Once again, I felt out of my depth.
Three weeks later the whole family relocated to Perth with an uncertain future. Rachael called me after meeting with the Surgeons. The biopsy was “inconclusive”. It was all still uncertain, she just needed to talk. Serena was going for an MRI next.
The specialists changed the diagnosis thrice in a week: cancer, histiocytosis and back to cancer. There was still some obscure tests to await. Rachael’s fortitude in the face of such absurd misfortune was admirable.
A week later Rachael, Serena and family returned to Broome, I had yet to hear the diagnosis. One lunch break I popped out to grab a sandwich and there they were. Serena still wearing a hot-pink plaster cast. My heart slowed as we walked towards one another. But Rachael was smiling…
“Ollier’s disease”, she gushed.
I blinked, the vague memories of this syndrome floating in dark corners of my hippocampus.
“It is benign!” cried Rachael. “She is gonna be Okay!”
Once again I found myself speechless and tearful in the public eye.
I have learned so much in the last decade. I have learned a lot of medicine. However, the most valuable lessons I have received from my patients. Country doctors have dozens of these unique relationships, they are woven into each day. This is why our craft is remarkable and rewarding beyond measure.
You never know when “your Rachael” will cross your path. In the bush every routine encounter may be the start of a long relationship. I try to carry this thought into every consultation. For me this is the essence of “small town” professionalism.
Through Rachael I see the long picture. Our patients have an astonishing capacity to heal and forgive. We are too often distracted by the science. The most prevalent delusion in Medicine is the belief that “knowing more” will prevent badness. This is a lie – terrible things happen to good people,the best doctors will err, we will sometimes harm our patients. Life often deals bad cards, we cannot control these hands. Our job is to be there and walk beside them through the uncertainty and turmoil. Our patients need an ear, a shoulder and more heart at times like these.
Back in 2009 I failed because I did not counsel from the heart. There was no ‘right’ answer – there was however a right thing to do. When Serena broke her arm last year I took a better approach. In doing so I never lost a moment of sleep.
Medicine practised from the heart is infinitely more satisfying for both the doctor and the patient. We are all clinicians… and we are all very much human. We need to embrace the humanity that is implicit in our daily work in order to serve our patients well and to maintain our own.
This is a really moving story Casey. It’s always incredibly challenging to deal with friends and colleagues and this story is perhaps the most difficult example I’ve read in some time.
Really glad that it was Ollier’s disease. Many years ago I had a similar case with the same diagnosis in a colleague who presented with a humeral fracture. We went through the same process of cancer/benign/cancer/benign/cancer. Tough conversations and difficult times, but nothing as tough as your case for Rachel and her family. Thanks to them and you for sharing the story.