When you care for the extremely pre-term, saying goodbye is a good thing – but this one left me reeling.
Last month, amid the furore of excitable transitions and welcome coffees for trainees and students, a little (corrected age) two-year-old boy graduated from my messy Monday paediatric clinic.
I had seen it coming from a few reviews away, and signposted to the family on several occasions that the nature of extreme prematurity outpatient follow-up, if the child progresses well, is to discharge at two years’ corrected age.
Routine care means setting up expectations as we went so that it didn’t feel like a sudden exit when the time came. I’d graduated moderate-late premature infants from clinic at the age of one without missing a beat, everyone happy and beaming and talking about birthday cakes.
Not this time though, with this special little boy.
Mum had three questions, which we lingered on longer than usual, watching him play contentedly with the threadbare furnishings of public outpatients, decorating the space with his burgeoning two-year-old imagination better than any amount of wealth could achieve.
There was a lull after mum inquired after my nephew’s health.
“I suppose we have to discuss discharge now.” The boy was now building a little town scene, the fire engine taking centre stage, and with a shy smile, handed me a broken piece to fix.
Before I could stop myself, my face was in my hands, ineffectively trying to stifle a sob of emotion that paid no heed to the professional setting we were in. His was the first family I had ever managed as a consultant, and I’d known him from his first arrival from NICU to our nursery, 1500 grams of milky possets, befuddling desaturations and crankiness.
I’d known his family from their early stresses of being NICU graduates, learned their coping strategies as a couple, their beautiful sense of humour, watched their ironclad resilience building when their baby had setbacks and their tears of joy when he grew from strength to strength, and cherubbed up to the point of graduating from special care nursery.
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So many phone calls and sleepless hours wondering if I’d made correct decisions to observe rather than sample his blood for infections. The jokes after he decorated his incubator with a poonami and the group giggle watching his Moro’s reflex at his exit baby check. From serious conversations in family meetings addressing queries about long-term consequences of extreme prematurity, to doing a little team jig at his nursery graduation.
We say so many hellos and goodbyes in medicine that it sometimes could feel quite second nature and inevitable. In training I moved so much, from my home country of Malaysia to Melbourne, from one health service to another in Victoria, then Tasmania, back to Melbourne, Laos, Northern Territory, then back here where I am standing still for now, for once. Standing still and drinking from the bittersweet cup of patients, students, registrars and colleagues growing up in our service, and releasing them to continue their successes elsewhere.
Some goodbyes will always feel more fraught than others, and yet others might feel like the severance of a bond you hadn’t realised could end. The same happens, I feel, in families and patients as well. I remembered feeling the heavy significance of this baby and his joyful family’s departure from our nursery, but feeling reassured that one of my own team will continue to love caring for them as I had in their time as inpatients.
The Fates weaving their looms immemorial meant that I found myself discharging them from nursery, but hilariously getting them as my first extreme premature follow-up in a clinic I’d newly been allocated as junior consultant two years ago.
And so our journey continued, which saw this little person grow in grams, then kilograms, then neck strength and walking, running and a burgeoning personality. I watched as his parents grew from hesitant, medicalised and anxious in their gentle and methodical movement about him, to endlessly showing me videos and laughter spilling out of the consult room into the quizzical shared allied health space.
Reams and reams of question in the notes app, photo logs of his poos, weird skin things that I openly said was probably all right but who knows. More giggles as we watched him chew on my teddy bear’s ears like I myself did all those years ago. Our distractible consults that took longer than they realistically needed to, because I simply had to tell them the bear’s origin story. That one time the registrar unknowingly took him before I did from the waiting room and I scowled like a thundercloud for the whole list.
In the years observing their milestones, I grew in mine too, one foot ahead of each other, and the clinic grew until he was by no means the only extreme preterm in it, and the place was threatening to burst at the seams with general paediatric drama. The consult room went from bleak to threadbare but at standard for public healthcare.
They too, watched as I grew from hesitant, fearful of asking for basic equipment to their sassy doctor who asks them the difficult questions because he knows when they look unhappy.
And so, last Monday when my patient and his mum watched as I had an unexpected crying attack at their final graduation, it dawned on my why this was so different.
The story of a preterm infant growing and developing without complication is not the novelty; it was the shared growing pains at a crucial time of our lives that had bonded us all so strongly. Even though the logic of our severance made perfect sense, it was harder to process the emotions attached to actually saying our goodbyes with the knowledge that the end of the professional relationship came with the end of our growing friendship as well.
His mum asked if I could give him a last cuddle and if they could take a photo with me; she and I hugged goodbye through some more tears, and we both said, meaning it wholeheartedly this time rather than just the regular doctor-parent joke:
“I hope we don’t have to see each other here again.”
And they were gone, the waiting room resuming its urgency. But for once, because the registrars were still in orientation practising resuscitation of extreme premature babies in simulation form, and I had the clinic list to myself, I sat in the moment for a spell, entranced by the empty space left by my little graduate and the chronologic two years and three months’ relationship that exited with his wonderful family.
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I am intensely jealous of my GP friends who talk of watching the babies they cared for growing into kids, and their family begetting more babies for them to care for. And the years ahead when even those babies might have babies of their own. Taking the long road together.
What a joy and privilege that must be – but there I was, left behind and heartbroken yet so proud to no longer be required.
Yes, far better to leave paediatric clinics and never have to return. Far better to leave us behind, that we can remember and miss them knowing that they are busy thriving in playgrounds, kinders, schools, then lives of their own.
To infinity, and beyond.
Dr York Xiong Leong is a general paediatrician in Eastern Health, Melbourne, working in public inpatient and community paediatric services, and a medical educator with Monash and Deakin universities. One of the best compliments he has ever received is “Babe you barely live on this planet”.
