Getting to the heart of the matter.

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Highlight of the week

Exercise is good for you

Lowlight of the week

Keith, eager to protect me from a scorpion, opens the door that I am using to restrain my resistance band. See the photo of my rearranged face. Exercise is bad for you.

Diagnosis and Treatment. The title of our first book. Often the two go hand in hand. Sometimes a diagnosis is all that you get. For many diagnoses, a cure may always be elusive. Despite this, most patients would like a treatment. But here in South Luangwa even basic treatments may prove elusive. Heart conditions in Africa are well down the pecking order of health care priorities. Diagnose the diagnosable. Treat the treatable. Mantras that help us stay focused whilst we do what we can do here. Confirming a heart diagnosis is tricky. Providing worthwhile treatment for heart conditions is a holy grail.

We have previously written about our child health clinics. Twice a week we place ourselves in the middle of a village, under a large tree, and sift out children. Children that need a vaccination or two and children who might not be thriving. We are honorary members of each village for 3 hours or so. The word hubbub captures the essence of the occasion. The noise from laughter, playing and crying can at times be a little overwhelming. Despite the commotion we must stay on our toes. The mums will tell us off if we miss a due vaccination. Perhaps more importantly though we must pick up faltering growth. We search for the needle in the haystack. That one baby who is not doing as well as expected. Last month, we found that baby.

Harmony is the mother of our baby. We were struck by Harmony’s appearance. She stood out. Keith nudged me discretely and whispered that he wanted to talk to Harmony about her skin. From a distance, we wondered if she had herpetic vesicles. So unusual to have small blisters symmetrically arranged on her face. Close up her diagnosis was more obvious. Her face is covered by neurofibromas. Little fleshy lumps. Neurofibromatosis is inherited and affects her mother and a number of other villagers. It causes the body to produce multiple benign tumours of the nerves and skin. There is no treatment for Harmony. She has to tolerate the disfigurement.

Harmony’s baby, Precious, was 4 months old that day. She was in clinic to check her weight and for her 3rd lot of immunisations. Her weight was lower than expected. Monica, the nurse doing her injections asked us to see her. Precious was working hard to breathe. The skin between her ribs and under her ribcage drew in with each breath. But Precious did not look especially distressed by this. It was clear this was a longstanding problem. In fact, Monica told us she had seen Precious in clinic a month earlier. She had sent her to Kamoto hospital with a presumed diagnosis of pneumonia. Precious had stayed in hospital for two days before being discharged. Antibiotics made no difference.

I spoke to Harmony to find out more. Precious was taking a long time to feed because of her breathlessness. She sweated whilst feeding. She had no fever. I listened to Precious’ chest. She had a loud heart murmur. Her heart was beating fast. Poor Precious clearly had heart failure due to probable undiagnosed congenital heart disease. Probably, her heart had not formed properly. Or perhaps she has inherited neurofibromatosis from her mother. Neurofibromatosis can affect the heart.

Now what? So often I have one foot in the UK and one foot in Zambia. In the UK, Precious would be referred immediately to a paediatric cardiologist. An echocardiogram would pinpoint the issue and allow treatment to be planned. A variety of medicines would stabilise her. High energy feeds would help her to grow. An operation might be the best way forward, at a chosen age and size. Her outcome would likely be very good. I have seen many babies like Precious do well in the UK. In Zambia things are not so rosy. Never in my career have I felt so hopeless. Precious little for little Precious.

We looked in our doctor’s bag to see what medication might help. We found a diuretic and worked out the right dose for her. No liquid medicines just tablets. I broke a tablet into quarters and asked Harmony to give her a dose straight away. A sip of water and down the tablet went. There was no suggestion of parental or child tablet intolerance. British parents and children so often conspire to refuse tablets. Or even insist on a certain flavour of liquid medicine. Is it the choice that has spoilt them? Hopefully Precious’ new medicine would help her breathing and her feeding. Thank goodness Precious isn’t precious.

So, what about doing an echocardiogram? Our clinic in Kakumbi was donated an ultrasound machine a couple of years ago. It has all the bells and whistles. Pristine and fully functional. However, it has lain dormant for 2 years. No one here even knows how to turn it on, let alone how to use it to get sophisticated pictures from inside the human body. The heart is a many splendid organ. Learning to get meaningful images of the structures and flow around the heart takes years usually. There was no training program provided with the well-meaning donation. So, the ultrasound machine sits redundant. Covered up, in one of the clinic rooms.

I have made it my personal mission to get the ultrasound into use. I contacted some colleagues in the UK at James Cook University Hospital where I used to work. Could they teach me to work the machine and to do scans using Zoom? A big ask. Richard reached out to Siemans and a lovely member of the Siemans team got in touch. We downloaded the manual for the machine and had an online tutorial. Keith helped me to turn the machine on and we relabelled the key controls in English. Magically I can now produce good images. Both still and moving.

Our ultrasound machine will mainly be used in the maternity unit. We need to know when twins are expected, when babies are in a breech position and when the placenta is in the wrong position. Placenta praevia means that the placenta is lying low in the womb. All of these states in pregnancy are risky for the mother and for the baby. To get the ball rolling with maternity scans: I have negotiated that a ultrasound technician from Kamoto hospital will come up to train the midwives in Kakumbi. Mind you “will come” is never in the bag until it’s in the bag. As I said, I’m on a mission.

Babies with scrambled hearts are not common. I use the word scrambled in a loose sense. These rare heart conditions happen when the complicated folding mechanisms that take place inside a growing embryo go awry. Our ultrasound machine can also be used to do echocardiograms. My right brain prevents me from visualising two dimensional images in 3D. So, I doubt that I will ever fully master echocardiography. But I do know a man who has already sussed what these subtle shadows on a cathode ray tube mean. I’ll tell you more about that later.

I rather got ahead of myself by talking about scanning Precious’ heart. I asked Harmony to bring Precious to clinic to see me the following Monday. She said she would. But Monday passed, as did two more Mondays and there had been no sign of her. What should I do? In the UK I would phone Mum. Harmony does not have a phone. Nor does her mother. I had tried to get their numbers when I met them. Few people in their village can afford mobile phones. In the UK I would next try calling the GP or the health visitor. Again, we have neither. Perhaps social services might help? You’ve guessed it…. I had to wait until our next village clinic to track her down.

Four weeks later, we were back in Harmony’s village for the child health clinic. I primed the staff to look out for the mother with neurofibromatosis. “I need to see her baby”. Fortunately, attendance at the clinic is almost 100%. Precious was brought to be weighed. She had gained 1kg over the month. Her breathing had improved a little. Her feeding remained slow and triggered sweating. I asked Harmony to come to clinic the following day. Again, she said she would.

The following day, true to her word, Harmony pitched up at the Kakumbi clinic. I felt a twinge of guilt. Harmony had walked 5km to the clinic. Too poor to afford a bike or a taxi. What help could I provide to Precious? I’m an Mzungu doctor desperate to use a fancy machine to get nice pictures of her baby’s heart. But for who’s benefit? I can’t fix Precious’ heart. I reckon I can use medication to help some of her symptoms. But Precious is likely to need surgery. If she struggles to get to our clinic, what are the chances of her getting to South Africa to a paediatric cardiothoracic surgeon? I am offering hope. Inappropriate? I will let you decide.

I used the fancy machine to scan Precious’ heart and got some great images. But as I mentioned before my brain is unable to imagine the three dimensions that these videos portray. I decided to take the scans to a real expert. My friend Jonathan foolishly volunteered to pitch in with interpreting scrambled babies heart echos. Unable to give up his day job after retirement! I sent the videos to Jonathan via WhatsApp.

Out of the grainy black and white pixilated video, Jonathan told me what was going on. The guy is a legend. We do not yet have a full diagnosis. At this point my original idea about Precious having a big hole in her heart is wrong. The scans did confirm that she is in heart failure. Jonathan gave me a few things to look for when I next see her.

Sadly, Precious is unlikely survive to the age of one, let alone to the end of childhood. It may be merely an academic exercise to work out the scrambled plumbing details of her heart. A promise to Harmony of benefit from this process might be cruel. My hope is that I can at least understand Precious’ problem locally. And give her family some realistic expectations. I would not want to send her to Lusaka, or Johannesburg to see an expert whose role would be to deliver just bad news. My job may ultimately be to deliver bad news to her locally. Distant hospital trips can bankrupt families financially and emotionally. My desire to know the diagnosis is not the most important thing here. It is very humbling to live here. Five child deaths per week in Zanzibar was the norm in the 1990s. Universal vaccination against childhood diseases, provision of clean drinking water and sanitation together with excellent education are largely responsible for child death to be a relative rarity here. Organised healthcare in Zambia offers early diagnosis and appropriate management of treatable illness. Thirteen weeks into our stint working in the African bush we now face Precious’ mortality. Might she be the first baby that we have looked after who is likely to die? If I know that she can’t survive, my job takes on a new angle. Treat the treatable. But my holy grail may be the best palliation that I can provide in a low resource setting.

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