Paediatric highs and lows

Weather - Maximum temperature 43 degrees Celsius

- Weekly rainfall 8 mm

Highlight of the week

The exhilaration of braving an approaching storm. Sand in our gin and tonics. Popcorn blown away.

Lowlight of the week

The rains arrive. Access to the bush camps closes.

I am used to culture shocks. My biggest so far was the quantum leap as I merged back into British ways in 1996. Living and working in Tanzania for 2 years gave me limited choices. Twenty essential medicines. Forty treatable conditions. Five medical investigations. Back in the UK the choices were myriad. Adjustment? Not half!

Adjusting back into medical practice in African from July has had certain predictabilities: Again, our list of available medicines is short. Again, we diagnose many conditions that we are unable to treat to a desired standard. The investigations that used to be at our fingertips are mostly well beyond our reach in South Luangwa. The microscope has been out of action for possibly a year. Lab reagents are elusive. We have been reintroduced into the depths of medical uncertainty.

In the UK I worked alongside a team of experienced paediatric nurses and trainees in a busy acute paediatric unit. We had multitudes of tests. Instantly available, night or day. More medicines than you could shake a stick at. But my trainees and nurses knew not to play fast and loose with investigations and medicines. Clinical skills and time were more reliable witnesses to the diseases that lay partly hidden than indiscriminate tests. My own skills had been honed in Zanzibar. I was not going to let my team fire off a barrage of expensive lab tests. Use your ears, your eyes, your hands and your brain. Only do a test if it will affect what you would do for a patient. Almost a mantra. My team learned to cope with the bare necessities. They were not in Africa but they knew the African ropes.

Back to basics I go. I reminded myself on day one in Kakumbi. History taking is a complex skill. Made tricky by the need to use a translator. I hesitate to say that Chinese whispers muddy the waters. Whether it is Chinese, Swahili or Nyanja that my patients speak, I already work with one arm tied behind my back. One of my translators tries to help by guessing my patient’s thoughts, feelings and preferences. She interprets rather than translates. I insist on translation. I ask questions in different ways to understand the nuances of how symptoms are described. It is so important to ask the right questions. The questions are key. Understanding the answers crucial. The buck stops with my examination skills. My senses are my tests. I have little else!

Joshua was 9 months old when I first met him in August. His mother brought him to clinic because his face was swollen. His face had appeared normal two days earlier. There was nothing else exciting about his story. He was usually fit and well. He was eating and drinking normally. He was fully vaccinated. Mum did not have HIV. His development was normal. It was time to use my senses. His face was indeed swollen. So were his legs. His blood pressure was normal. The rest of him normal. I realised with a smile that I could do a useful test.

I asked mum for a urine sample. She looked puzzled. You will need to sit outside with his nappy off. Wait until he passes urine and catch it in this pot. She laughed at me. Thank goodness Joshua is a boy. It's far easier to catch a baby boy’s urine than a girl’s. Ten minutes later, mum proudly came back in with the sample. I used one of our precious urine dip sticks. This showed that Joshua had a very large amount of protein in his urine. My clinical guesswork was right. He had nephrotic syndrome.

In nephrotic syndrome the kidneys leak protein. Kidneys were not quite my bread and butter in the UK. But I know enough about kidneys to get by. Usually, I would do a batch of recommended tests and pass Joshua on to a kidney boffin and their equally capable specialist nurses. Whilst training I dabbled in kidneys and I know the basics. Nephrology these days is super specialised and the care of kidneys is complicated. The long-term outcome for patients is great. But it usually depends on lots of clinic appointments, tests and complex medication regimes. Joshua was never going to get this level of specialist care and attention here.

Joshua had nephrotic syndrome. His swollen face and urine full of protein told me that. But I had no easy access to other tests. My conscience told me that other investigations were unlikely to change what we could do for Joshua. A trip to Kamoto might tell me his kidney function and his blood salt levels. On a good day. And the trip might bankrupt Joshua’s family. My conscience chirped again. Jiminy Cricket style. Steroids would save the day. Only test if a test will change what you can do. I had my back up against the wall. I would like to treat Joshua with some steroid tablets. I found myself saying to Joshua’s mum.

Joshua would probably respond to steroids. Steroids that neither Kakumbi rural health clinic nor the Zambian health service could provide. We needed a fairy godmother. Jiminy Cricket could not help here, but as luck would have it: a fairy godmother had recently passed by. Cheryl is an American tourist. She loves South Luangwa and all of its genuinely wild leopards. Whenever she visits, she donates medications to help supplement the void. With one wave of her magic wand: I had a stash of steroids. Twenty milligram tablets of prednisolone to be precise. Joshua would usually get 40-50mg of prednisolone daily for 6 weeks in the first instance in the UK. I eyed my modest stash. I decided to give him 20mg a day. This was no time to share options with Joshua’s mum. His treatment would be what it would be.

Giving an explanation of nephrotic syndrome to mum was tricky, despite Joyce’s best efforts at translating my outline of the condition. I doubt that mum really grasped what nephrotic syndrome might mean to Joshua. I told mum to watch out for side effects from steroids and asked her to come back sooner if Joshua’s swelling became worse or if he appeared unwell. Particularly if he had symptoms of an infection. Joshua’s mum agreed to give him the medication and to return after a week with a fresh urine sample.

A week later and Joshua appeared smiling at my clinic door with his mum. Mum was clutching the urine sample. Joshua’s facial and leg swelling had all gone. His urine was clear. I had not been expecting such a quick response. I wondered if my diagnosis had been correct. Could I justify leaving Joshua in the community on such a high dose of steroids for another 5 weeks? I decided to halve the dose and to see him again after a week.

Joshua and Mum were back at my clinic door after another week. Again, all was well. Perhaps I could stop his medication now she asked? Reluctantly I did. Surely two weeks of steroid is not enough? Jiminy said to me. Three days later, Joshua was back. But this time without the smile. The swelling was back. His proteinuria had returned. The nephrotic syndrome had relapsed. Two weeks of steroids had not cured Joshua. He was not really in remission. We had stopped his steroids too soon. Mum’s instincts had failed us both. My conscience smiled at me knowingly.

Mum agreed that we should start the steroids again at 20mg a day. Four weeks at 20mg might be enough I hoped. If he stayed well: I would plan to see him each 4 weeks and I would hope to half his dose of steroids each time. Hope became more solid with each month that passed. We got down to 5mg on alternate days and then we bit the bullet. Joshua would stop his medication completely. As it so happened, I had none left.

Joshua never got any of the other medications deemed essential in the UK. No medicine to protect the lining of his stomach from ulceration. No antibiotics to prevent infections. No protection from chicken pox. Nephrotic syndrome was too dangerous for us to leave Joshua untreated. Death a very real possibility for him. Joshua, mum and I walked the line without a safety net. Our balance was true. Joshua is now in remission.

Joshua has now been off all medication for 4 weeks. He remains well. I have my fingers crossed that he does not relapse. The local pharmacy does stock steroids but they are beyond Joshua’s mum’s budget. My crossed fingers will have to do for the time being. With a wing and a prayer Joshua appears cured.

But Yang is inextricably linked with Ying.

Three weeks ago, we foolishly used the Q word. We were marvelling at what a quiet day it was. Joyce, a member of our reception team was translating for me. Joyce had time to pump me for my life story. She sees me as something of a role model and was keen to get some top tips. The use of the Q word so often a curse: Suddenly a lady was rushed in clutching a baby. Please see this baby Dr Ginny. It’s an emergency.

I cleared the last patient out and ushered the new one in. Vanessa held her toddler wrapped up in her arms. Good morning, how can I help? I chirped, with Joyce translating. Vanessa was breathless and hesitant: Zimba fell down this morning…. and did not get up. I started to probe a bit more with the history. But as I did, I reached over to look at the baby. Looking for an instant clue to Zimba’s health.

Zimba felt warm. Perhaps he’d had a febrile convulsion? But he did not look right. I further exposed him. He did not appear to be breathing. I tried to feel for a pulse. I could not feel a pulse. My own pulse quickened. I shouted for Keith to come from next door. Keith heard the urgency in my voice and arrived immediately. We took Zimba from Vanessa’s arms and put him on the examination couch. He was floppy. There was no respiratory effort. No pulse. His pupils were fixed and dilated. Zimba had died.

Time stood still. There was no urgency to try to save Zimba now. But my pulse did not slow. The story of Zimba’s demise was vague. Although Vanessa was still breathless from a forced march, too much time had passed for me to even consider resuscitation. Vanessa and Zimbas’ house was more than a mile from the clinic. Should I share the awful news with Vanessa or probe to find out how Zimba had died?

I broke the news that Zimba had died. Vanessa crumpled. Disbelief on her face. She started to wail and rock. I tried to support her. Everyone in the clinic was distressed. Are you sure there is nothing you can do Dr Ginny? I was sure.

When there is a death, the whole clinic struggles to function. Suspended animation you might say. Families gather and express their grief very vocally. The women wail and cry. The men try to appear stoical. The clinic staff try to hold it together. But everyone finds a quiet corner and sheds a tear. Us too. There was nothing we could have done. I waited patiently, trying to offer a comforting word. I needed to understand what had happened. I owed it to Zimba.

After what felt like an age, I met with Zimba’s grandmother, Chakri. She had been caring for Zimba that morning. 18 months old. Fit and well when he jumped out of bed. A normal day. He played as mum went to collect bananas from the garden. Chakri gave Zimba some porridge for breakfast. He suddenly started to cough. He spluttered. He couldn’t get his breath. He fell to the ground. He did not get up again. That’s all she could tell me. Something is stuck she said. Why can’t you just remove it? I had to explain: It is likely something did get stuck in his airway. Some food or possibly a toy. But it is too late. Zimba is already dead.

I don’t think Vanessa or Chakri had even considered that ZImba could die. They thought they just needed to get him to the clinic. The doctors would be able to wake him up. He had been healthy and strong. Healthy baby boys do not just die.

Shell shocked as we drove home, Keith and I reflected that child death is thankfully rare in this valley. Education, hygiene, immunisation, modern medicine and decent nutrition take credit for that. Zimba might not have died in the UK. First aid training is almost taken for granted where we come from. A decent back slap might have cleared Zimba’s airway. Or even a Heimlich manoeuvre. A calm voice from ambulance control might have given Vanessa or Chakri confidence to bring Zimba back to life. Keith and I don’t take these things for granted. We do what we can do.

Communities learn from misadventure. With Zimba there was nothing we could do. But prevention is key. We are about to deliver a first aid session for a small bush school here. How to treat a choking child will be first thing we teach.

From triumph to tragedy. One minute I was the all-conquering hero. The next minute I am impotent. Two contrasting patients. I reflect. I learn. I got away with my risk taking with Joshua. He is in remission with no complications. He is appropriately safety netted in the community. We hope he stays well. I treated him pragmatically. We don’t have access to better care here. Ethics committees might have a field day and perhaps even might have referred me to the GMC. All of our UK guidelines were trashed as I chose what I believed was in Joshua’s best interests. I took some risks, I guess. Keith would usually suggest that I share the risks with parents. And then make a joint decision about how to move forwards. But with Joshua it was impossible to share the risks meaningfully with his parents. I shared the risks with Keith.

When I signed up to do this job, I signed up to share the job with Keith. He shares his car and his house with me. This job is the best job in the world. And the worst job in the world. Because I share the job with Keith, we both cope with the lows and cherish the highs. It’s a job worth doing, but to do it well, the risks need to be shared with someone. Usually, I would share uncertainties with parents and colleagues. Here we are creative in how we share our uncertainties, but our job share certainly lightens our load. Keith was by my side as I pronounced Zimba dead. Our common experience, in our shared job, makes processing the loss of Zimba unspoken but real. Grief felt by Zimba’s family sends ripples out. Our little clinic mourns. Keith and I mourn.

Child health week. Vitamin A and deworming tablets taken with no fuss

Pregnancy test positive. Urine tests out of stock.

Baby warthogs.

Impalas dropping everywhere