The Anglo-Ethiopian Society
Nama fakkacha - Now I am equal to any human being (Oromifa)
Author - Matthew Fell
Nine weeks. 21 villages. 400 patients. 38 questions. Health research deals in facts and the review of cleft lip/palate care which I completed this spring with the facial-disability charity Project Harar was no different. Of course there were spreadsheets, coded photographs, otoscopes and speech recorders but, looking beyond, the patients gave us poignant insights into rural Ethiopia. Their candour brought to life what it means to grow up looking different in close-knit communities. I witnessed the transformative difference a simple treatment can make to all aspects of an individual's life.
Having finished my medical degree I left behind a drizzly Manchester and headed to Harar. There were just a couple of days to acclimatise in Addis Ababa en route and make final preparations with the Project Harar team and those few remarkable surgeons who continue to dedicate themselves to Ethiopia, foregoing the opportunities offered to them in North America.
My job was to locate and interview patients who had received surgical treatment for cleft lip and/or palate, assessing the operation's success and the need for improvements. I was immersed in Hararghe culture, travelling long distances around Harar and Asebe Tefari as far as Gursum in the east and Awash in the west.
Each day we set off from our base in the ancient walled city of Harar and travelled across stunning mountainous scenery to reach village health posts. The morning 'commutes' were adventures in themselves. Our magnificent drivers, Teddy and Mohamed, often had to improvise to overcome engine failures and tyre punctures. On our arrival at each village, a group of 20 patients or so would gather, waiting patiently. It amazed me that 400 families - each with their own pressing needs back at the farm, and in exchange for little more than a Fanta, some biscuits and a little bus money - travelled miles for a checkup and discussion.
|Before and after surgery
Photo © Matthew Fell
Nearly all the patients we saw were farmers. Many families came beautifully turned out; the girls in particular looked magnificent in traditional Oromo dresses and necklaces. Few wore shoes. We asked two socio-economic questions. Fewer than a fifth had a mobile phone in the family. Not a single patient's family owned a motor vehicle, though one wry gentleman surprised us: 'Do I own a car? Why yes! But here in Ethiopia we call it a bull - my bull is my car!'
We recorded medical findings relating to facial function, the surgical scar and ongoing treatment needs. But we also invited the patients to express what was most important to them. How was life with a facial disfigurement? Had treatment made any difference? How could Project Harar improve what it does? In the cool and calm of those village clinics they told us.
Project Harar will publish the full findings on its website and elsewhere. For those with a cleft lip, a single surgical repair produced an excellent result impacting everything from self-esteem to eating functions. Patients were very keen to tell us how much their life had improved since the operation. We heard many heartbreaking stories of how, prior to surgery, patients had been miserable and isolated from the community. Many youngsters were too afraid to go to school, the victim of taunts of "window mouth" from other children, neighbours, or even from their own teachers. Parents often reacted by withdrawing their children from school to avoid further "quarrels".
|With party blower in the clinic
Photo © Matthew Fell
It was incredible to hear then that after the operation the children gained the confidence to attend school, to go and buy goods in the market and to play with their friends as equals. One surprising benefit involved chores and participation in family ceremonies. Previously unknown to us and our local surgeon friends - a metropolitan bunch - the patients suffered a daily, demoralising feeling of being useless compared to their brothers and sisters because they could not blow on hot embers through their deformed lips to make fire. It was thrilling to learn that family bonds improved after surgery and the children were delighted to show off their new powerful lips by blowing bubbles and party toys in the health clinics.
The happy results were not just limited to the children. After surgery we heard from many adults that their position in society had improved and their marriages made more content. Older men spoke proudly of giving away their daughters at weddings, women negotiated for themselves at market, all were happy to surprise their friends with their new look. Isa, a charming farmer from Bedesa, discovered a talent for singing and, much to his surprise, wooed women in surrounding villages - he had managed to find two wives!
But the research also confirmed our hypothesis that patients with a cleft palate experience greater problems which cannot be addressed through lip surgery only. The research will give practical aid to those patients who could benefit from specialised speech, hearing and surgical therapies which have just become available in Addis Ababa. Project Harar now has its work cut out, organising referrals for patients identified in the research.
I am fortunate to have experienced the cultural wealth of eastern Ethiopia, the richness of its food and music and the kindness of the people. I heard directly from the patients that cleft lip and palate was a problem in their community because it made them unequal in society. For many, this quick, low-risk surgery had succeeded in correcting this - far exceeding my expectations in its positive social impact. This project also highlighted that for those with complex clefts, one operation is simply not enough to address the profound disabilities. I hope that through this action-research the provision of care can be improved and expanded to more of Ethiopia's rural communities. To the people of eastern Ethiopia I say 'Galatoma!' for their hospitality. Thank you for welcoming me.
For more information please contact Project Harar:
Phone: +44 (0)20 7794 4856