Diagnosis

Published on 6 September 2025 at 05:06

Photo of the week: Being judged

Highlight of the week: Two become three as Joel joins the Kapani set

Lowlight of the week: Elephants claim a 5th victim

Maximum temperature: 38 degrees Celsius

Rainfall: Only in our dreams

It seems important. Putting sick people into categories. Giving them labels.

Clinicians love a diagnosis. People become patients. With that comes the permission to treat. The possibility of cure.

But the sword is double edged. Cutting both ways. Curing in one direction. Carving up when wielded carelessly. A diagnosis often delivers collateral damage.

This week finds me on the trail of a diagnosis. But the trail is fraught with hazards. The goal illusory. Come and explore with me. I’m working at our new District General Hospital. Velos.

I am really enjoying my mornings at Velos. The new district hospital. I guess I’m an acute paediatrician after all. I’ve worked in the Zambian primary care environment for 4 years. Sometimes it is stimulating. But often my mind wanders. I am not as useful as Keith. He is pulled in several directions every day. Eyes. Ears. Psychiatry. Hypertension. Diabetes. He always seems to be seeing and sorting. General practice is his baby. But even babies aren’t really my baby. I am a little too specialised. Sick children are my thing. And in Kakumbi, they are mostly not properly poorly. Lots of flu. Coughs. Skin rashes. But the staff are now pretty happy to deal with most of this. Their antibiotic stewardship is now pretty hot. The staff dole out small rations of paracetamol. Nowadays, everyone is happy with less being more. Patients expect less drugs. Leaving more medicines for those in real need.

But up at Velos it’s all going on. The threshold for admission is high here. Partly because primary care sorts out the chaff from the wheat. But the bottom line is that people only go to hospital if they really need to. Geography controls the paediatric admission rates, even more than our clinicians do. Nobody has a car. So the rate limiting step for hospital admission is the availability of our single ambulance. Secondary care only takes the crème de la crème. This makes a paediatric ward round interesting and eye opening. Rarities are concentrated. Just what my brain needs. A diet of the weird and the wonderful. Throw in the lack of tests and a limited supply of drugs. And my grey cells can really get stuck in.

Tuesday is our 3^rd planned visit to Velos. I arrive on the ward to find the ward round prematurely complete. They forget that I’m coming. But I am now African. I adapt and make a plan. Find a role. Find a niche. Plug away. I help with a difficult cannulation. I chat with staff about shared problems. Pet topics. Challenges. Thorny issues. Pain relief and dressing changes amongst them. A screaming child, the blood curdling backdrop to our conversation. As the morning calms down and the screams subside, we firm up plans for next week's later ward round.

It's 11:30. I go on a Keith hunt. Hoping that he has saved me something that might right up my street. My timing is impeccable. He is looking for me. Gin, come and see this child in the emergency room. His face is swollen. Maybe he has nephrotic syndrome?

I head to our mini-casualty. My brain moves into 2^nd gear. I find Peter. Twelve years old. Lying quietly on a bed. Surrounded by concern. The team around him. Two clinical officers. Two nurses. A machine is making an annoying beeping noise. Without a thought, I turn to silence the bleep. But my thoughts suddenly intrude. The numbers make me crash through the gears. Peter is properly sick. His oxygen saturation is 78% on oxygen. His pulse rapid at 120. There is a rabbit away. Or should that be a hare? Whatever. I’m set to chase it. Peter looks chilled. Perhaps too chilled. But with it. Alert. His mother by his side. We start at the beginning. With his story.

Peter has been particularly breathless for 1 week. No cold. No cough. He is not eating well and has some vague tummy pain. No fever. No vomiting. No diarrhoea. No constipation. He reportedly started to swell 2 days ago. His face. His abdomen. His ankles. Prior to this, he seemed well. But mum now admits that for a year he has struggled to walk. Getting a bit tired and breathless. He is doing well at school. He’s a 5^th grader. Who wants to work in health.

I look more closely at Peter. In medical school I was taught to start with people’s hands. My clubbing aspirations were not confined to the Stage Door in Newcastle. Clubbing. An indication of serious heart, or lung, conditions. Those conditions do not remain nameless. I reel them off, in those confrontational medical school seminars. Not fully connecting with the personal health challenges owned by the owners of these rounded finger nails. But in my career in paediatrics: only one of my hands has been needed to record the children that I have seen with clubbing. But Peter makes me use my other hand. My hand holds his. To wonder at the convexity. To connect with Peter. To offer him support. But my medical memories break the personal connection with Peter. I now have my hands full with his deteriorating health.

Peter has impressive clubbing. His fingers have small drumsticks on their ends. The like I have never seen. These drumstick beads tells me that his illness has been brewing for some time. Months or years for sure. His pulse is weak. Despite 100% oxygen, his oxygen saturation won’t budge from 80%. He is breathing a bit fast. 28 breaths in a minute. But he is not struggling to breath. No noises. His chest is clear. This is not a lung issue. His heart is sick.

Many of you are medical so I will give you few more clues: his heart is working hard. I can feel it through his chest wall. The right side of his heart is oversized. His heart sounds are interesting. He has a loud 3^rd heart sound. No murmur. He has a very swollen abdomen. There is fluid in there. His liver feels big. He has ankle swelling. And facial swelling.

The medical team look to me for answers. I have some. But not the key diagnosis. I announce that he has right sided heart failure. Pulmonary hypertension. His lungs are stiff. The pressure in the lung blood vessels is too high. So his heart cannot push blood into them properly. Each time his heart beats, only a small amount of blood goes through his lungs. A lot of blood takes a shortcut. Probably through a big hole in his heart.

Undiagnosed congenital heart disease. His heart has dodgy plumbing. Scrambled before birth. The blueprints weren’t followed. A decent baby check would have spotted this. Most likely his oxygen levels have been fine for years. But a stethoscope placed on his heart even in those early days would have trumpeted the plumbing issue. If a decent plumber had been called, back in the day, the problem might have been fixable. But more on that later.

Back in present day Zambia we now have some options. Our state of the art, shiny new hospital lets me look inside of Peter’s heart. To see how it’s built and to see why Peter’s heart has gone south. A fancy cardiac ultrasound machine looks at his heart muscle, valves and blood flow. An ECG checks out the heart electrics. Shining a light on Peter’s dark cardiac health. I ask the staff to give Peter some diuretics to nudge his heart in the right direction and reluctantly leave the hospital. My carriage awaits and I can’t risk it turning back into a pumpkin. We have staff to move around the community.

Peter appears to be up a brown murky creek. His paddle is floating hopelessly in the opposite direction. There is nobody willing, or able, to jump out and retrieve the paddle. Despair is our overriding emotion. Keith and I share our very short list of bright ideas as we drive away. We resolve to phone a friend as we stop to pick up our tired, overheated, community staff.

The following day, my phone pings to relay the dark truth inside Peter’s heart. Tetralogy of Fallot in Zambia punctuates lives with too many commas. Pauses for air, in a breathless existence. And a final full stop. Written much too soon.

Peter has undiagnosed congenital heart disease. A problem called Tetralogy of Fallot. A picture I am very familiar with in the UK. Normally diagnosed within hours, if not days, after birth. British babies are sent to a regional paediatric cardiothoracic unit. They may need early surgery. Sometimes they are given medicines until they grow big enough for corrective surgery. But even then: a magical heart operation is performed by 4 months of age. They can usually expect to lead normal lives. Into adulthood and beyond. Paddles in hand. Battling through rapids. Clean water churning under the robust boat that holds them.

Peter’s journey will not be a positive adventure through his short life. He has complications arising from a poorly plumbed and uncorrected heart. We can’t reverse the damage already done to his pulmonary blood vessels. We will never be able to make him pink. His heart failure might be managed. But never cured. He has a very reduced life expectancy. His breathing will get worse. Oxygen unable to get to his brain and vital organs. His body will become water logged. His parents will likely search for support. Better care. Funding to travel. A quest for medicines, an operation. Some hope. But this short essay is likely to come to a heart twisting, premature end.

The diagnosis is now in Peter’s notes. Paper and transitory. Or virtual and subject to network failure. We have no real treatment to speak of. Peter’s diagnosis spells the end of hope in our adopted homeland. Zambia overwhelmed with late diagnoses that overwhelm people and their families.

One lone olive branch reaches out offering solace. Precious gives us hope for Peter. I diagnosed Precious’ congenital heart disease at 3 months of age. (https://keithandginnybirre.wixsite.com/intoafrica/post/getting-to-the-heart-of-the-matter) We wrote about her during our first year in South Luangwa. She lives on, somehow, against poor odds. We plan to see her next month. To chart her unusual Lazarus-style survival. I hope get to a decent picture of her heart now. To figure out the plumbing and to make sure that no stone remains unturned for Precious.

Meanwhile Peter’s plot Peters out. He dies in the night. In the referral hospital 3 hours to our South. The Southward trajectory of his heart complete. The pings on his monitors stop. Full stop.

We wonder at the possibilities of a future Zambia. Where future Peters, born as short stories might be rewritten as epic novels. With new born vigour in a capable health service that includes wonderful hospitals like our own Velos. Could it be possible that Zambia will no longer be the wrong country to be born in with a scrambled heart? Will Zambia be a place where making a diagnosis will really make a difference?