Who gets surgery?

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Today we will welcome the surgical team to Ethiopia. They are comprised of the UK’s most skilled and experienced maxillo-facial surgeons, anaesthetists and theatre nurses. They flew overnight and will drive straight to our Cheshire home where we will present the medical and surgical details of the adults and children to whom we have grown so close over the last two weeks. The questions on everyone’s lips is ‘who gets surgery, and who doesn’t.’ The anticipation of the patients is immense. Most have been living with this stigmatising condition all their life, and here was a dream opportunity to have it fixed by the best surgeons in the world, and for free. Some have travelled across borders, having never left their home village and surroundings. They have spent two weeks meeting others who have seen the benefits of surgery, talking about the new life that awaits them after an operation. Unfortunately not all cases are amenable to surgery, and not all the cases have been caused by noma. Some of our patients are inevitably going to be let down.

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Bekalich who feeds us every day

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The girls having fun

Who would you choose between these two cases?

Deshio is from South Sudan. She doesn’t know her age but from the profile of the unaffected side of her face she looks about 25. The damage to the left side of her face is extensive. The whole upper jaw has been destroyed and I can see deep into her oral cavity and the long tongue extending to the back of the throat. The roof of her mouth has also been destroyed and clearly in sight are the moist spiral conchi of the inner nasal cavity against which the tongue rests. It reminds me of the faces that have seen dissected for display in the anatomy demonstration lab, except the parts of Deshio’s inner face move as she talks. I am fascinated from a scientific point of view, but the face is unattractive. One would think that this woman was outcast from her village but in her arms is an 8 month old baby, and by her side is her husband, a striking tall man with a face covered in beautiful tribal scarifications. I take the history through two translators. I want to find out about both the functional impact of her injury, and the social impact it has on her life; she can eat everything normally, including solids; she has no trouble speaking or breathing; she is accepted in her village and does not cover her face; she is married and this is her third child; her primary concern is the aesthetics of her defect. She is likely to need a series of four major operations to repair the damage. We must consider that with four major operations there is a risk of leaving her three children orphaned in rural South Sudan. It seems like she is achieving a lot of her life goals, but the people have donated money to treat Noma, and here is a classic case.

Mascaram is a 17 year old girl from Northern Ethiopia. She has had a disorder of the jaw since birth. Her lower jaw, or mandible, has not grown in the normal way and remains very small in comparison to the rest of her face. The jaw does not function properly and is clamped shut but for about 3mm of movement. She’s only ever been able to eat a soft diet, hence a remarkably low BMI of 14.0. She is not married and has no children. When asked if she suffers bullying she becomes visibly upset. This disorder has plagued her childhood, and now it’s stopping her in all the social discourse that make up the transition into adulthood. An operation could successfully open her jaw, but previous experience shows that without quality post-operative jaw physiotherapy the jaw is likely to clamp shut again. Do we know this girl well enough to ensure she performs daily physio in the community with no professional follow up? An operation could change this girl’s life, giving her all the opportunities of marriage and children that may otherwise be out of her reach. However it was not noma that caused this jaw defect, and the money we are spending was given to us on good faith for the treatment of noma. The typical face of noma seems to generate a lot more money than a picture of a small chin.

These are the sorts of decisions that await our surgeons and anaesthetists later today. Between them they have many decades of experience, and for many this is a return trip with Facing Africa. We trust they will bring all their wisdom to the meeting. Let’s hope they got some sleep on the flight.

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Julia, Sue and Gez, covered in holy water (they claim..)

We continue to enjoy life at the Cheshire home. Last weekend Ethiopia ground to a standstill to celebrate Epiphany. There is no doubt in any of our minds that The Ark of the Covenant does indeed rest in Axum! Julia and Sue went into Addis to experience the celebrations and were covered in holy water. They even bought some back in a bottle for me. Here’s some of their photos from the day.

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There has been lots to explore in the surrounding area. There’s normally time for a walk in the evening around the farmlands that encompass us here, and time to meet some of the locals. Meetings comprise of two of three words of Amharic (impossible language…), several round of handshakes, and lots of smiling. There is nothing to complicate the simple experience of human beings spending time together, from different worlds, enjoying each other’s company.

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“There’s nothing I like more than a gin and tonic and a roll around in the hay.” – Susan Criswick, January 2014

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No pictures of birds yet and I can feel the birders getting twitchy. Pictured here is the stunning blue-breasted bee-eater, the most agile of birds in flight, with the distinctive ‘click’ as an insect is caught. Below our colourful friend are a pair of timid Erckel’s francolin, caught sneaking about during an early morning stroll.

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Blue-breasted bee-eaterImageA pair of Erkel’s francolin

I’ve been having a wonderful time with Julia and Sue, and I’m glad to hear that their friends and family have started following the blog. They are both very special people. Their kindness and energy is an inspiration, and there is hardly an hour that goes past when we are not all laughing together about something. I couldn’t wish to be here with two more joyful people. Slushy stuff over..

Many thanks to Julia who must take credit for all of the photos that I’m including in the blog.

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Noma – the face of poverty

The view from our home

The view from our home

Noma, or cancrum oris, is a disease that exclusively affects the poor. It disappeared from Europe around 100 years ago although there were sporadic cases during the two world wars. It is caused by an infection arising in the mouth, usually starting as a benign gingivitis. Children who are malnourished do not have a strong enough immune system to fight the infection. The bacteria spread into the skin, muscle and bone of the face, causing a gangrenous infection. Most (about 90%) of these children die, either because of overwhelming infection or because they have lost the function of the mouth and are unable to feed. Those that survive are left with defects affecting large parts of the face. The healing process is particularly fibrotic, and the jaw is often left clamped shut.

An example of Noma

It would be unfair to post a picture of one of our patients but this photo is taken from our website as an example of noma.

Derrn, an 18 year old girl from Somalia, is one of those that survived the infection as a child. The wound she was left with affects the majority of the left side of her face. As I removed her head scaff to examine her the first thing to hit me was the smell. Instead of a cheek I found a disordered mass of gum and teeth protruding, covered by opportunistic fungal infection. The lower half of the left eye socket has been destroyed and the globe of the eye was falling forward. The cornea of the eye is scarred and she is blind from that side. The jaw is clenched shut. I asked how she eats, and I am shown where teeth have been removed to allow her to squeeze in what she can, something she’s been doing since she was four. As doctors we see many gruesome things, defects of many different parts of the body, but when a face is affected to this extent, it affects you in a different way. I’m not ashamed to admit that I made an excuse to sit down for a minute, write some notes, and compose myself, before continuing with the examination. There is no other word to describe how you immediately feel looking into a face like that – you feel revulsion. The doctor’s office is often a stage, and I acted as best I could, but I think Derrn could sense how I had been affected, because she has sensed that revulsion in every person that has ever looked at her face, as long as she can remember. She has never been allowed to leave the house and she’s painfully shy.

The treatment for Noma is complex and expensive maxillo-facial reconstructive surgery. The is no condition that poses a greater challenge to the surgeon and anaesthetist. Intubation is often nasal, using fibre optic guidance. The condition occurs in countries with limited medical resources, and affects those with no money themselves for private care. As such the condition would remain untreated if it weren’t for niche NGOs. I’m in Ethiopia with ‘Facing Africa’, an NGO based in the UK which has been working here for around 6 years. They do three missions every year, treating about 30 patients per mission. The cost is about $3000 per operation. Complex cases may need around four operations. I am working at the opposite end of the care spectrum from where I am comfortable. My interests lie in widespread cheap measures which prevent disease, rather than expensive specialised measures which treat the condition in a few. But the argument supporting NGOs like Facing Africa is strong. As long as there are people suffering with the condition, there is a need, and the charity make all their own money for this particular condition. This argument is strengthened when you meet those with the condition, those who are suffering at the extreme end of the human condition. I look forward to seeing how my opinion of NGOs like Facing Africa change during the months I am here.

Kids at the Cheshire Home

Kids at the Cheshire Home

A morning game of football

A morning game of football

We are based about 30 miles West of Addis Ababa, in the arid highlands about 2,800m above sea level, and you can feel it on the incline. It’s a beautiful setting, with fantastic views across the highlands. Mornings are fresh and clear with fog filling the valleys. There’s an abundance of wildlife. We share the compound with a troop of black and white colobus monkeys, a giant tortoise, Menelik’s bushbuck, and some wonderful birdlife. We are guests at a Cheshire rehabilitation centre. Lionel Cheshire was the husband of Sue Rider and set up the homes in order to look after unfortunates. Many in the developing world care for children affected with polio. Here in Menagesha we are guests of around 50 children who are proud to show off their various limb prostheses, donated wheelchairs and crutches. You can hear them playing and laughing wherever you are; one legged football, wheelchair races, table football, the girls in circles making crochet. They are an inspiring group and fill the air with a feeling of strength against adversity, a feeling which is beginning to rub off on our patients. It’s a pleasure again to be living in a community dedicated to the care of the under-dog.

One foot in the rave

One foot in the rave

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Meneliks bushbuck, male

We get the feeling that we are living as part of this community, not just coming in to work. The psychological care of patients with Noma is just as important as the surgical care. We are living each day side by side and it’s amazing what progress has been made in a week. A few days ago the patients stood by themselves, a state which they are so used to. Some had never met another person suffering the same condition, and thought they were the only ones, in isolation. We have watched the friendships grow, and now there is just as much laughter coming from our side of the Cheshire compound. A huge part of this is down to the enthusiasm of the two nurses who have also come from the UK, Julia and Sue. Both from Dorchester, and their first experience of Africa, they’re taking it in their stride; big games of football and frisbee, colouring books, dancing, smoothie making. And who would have thought it – birdwatching. I had packed the binoculars and extensive field guide ‘Birds of the Horn of Africa’ for personal nerdish indulgences only, but they’ve been a real hit. Everyone’s into it. Many were new to the concept of binoculars, especially our desert dwelling elder Hassanbule from Somalia. He shrieks with laughter and flaps his hands to mimic the bird he has found down the eye pieces. The birdlife is rich. Highlights include this small forest goshawk, the white-cheeked turaco, and the male African paradise flycatcher, photographed here in breeding plumage, it’s white tail feathers perhaps five times the length of the body.

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Lesson 1 – Principles of identification

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Forest goshawk

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Male African paradise flycatcher, in full breeding plumage

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Whilst the boys play football

The other nurses are Ethiopian born and trained, and an absolute pleasure to work with. All the Ethiopians we have met are kind and gentle. They are elegant and smile easily, and keen to fill us with extremely strong coffee at every opportunity. The famous coffee ceremony is often put on. The fresh beans are roasted on a hot plate for all to smell, then crushed. The coffee makes three rounds – arbor, bereka and toner – starting strong and becoming weaker. The situation sums up what I have seen of Ethiopian culture – the ceremony seems to have Arabic roots, whilst the humour of the conversation is classically central African. It’s a beautiful and rich mix of influences from the north and the south.

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Our beautiful nurses – Merron, Marima and Aden

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The coffee ceremony

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Nurse Merron with Midiwe who had flap taken from her back last year to repair the defect which affected the left part of her face. Due for her next operation next week.

We have just 9 patients so far so things have seemed a little quiet, but there is no better opportunity to enjoy being part of delivering proper holistic care. This is a privilege not often afforded to the doctor, particularly not in the UK. Yesterday was epiphany and many patients would not make the journey until they had celebrated with their families. We are expecting 6 new patients traveling from South sudan today, and perhaps another 10 at the weekend, when the surgical team arrive, at which point the real work begins.

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Fosier, the guardian of one of our patients.

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Getting the hang of it and going solo