Mohammed’s (Cleft palate and lip) and Hassan’s (Noma) Story
Two boys, Mohammed and Hassan, both fourteen, together with Sebesebe Ayele our Ethiopian ‘Director of Operations’, have just returned to Harar after spending a tough but hugely successful month in London receiving complicated facial surgery.
The intrepid group arrived at Heathrow after a tiring journey from Eastern Ethiopia that had lasted nearly three whole days.
Full of hope, but rather fearful of exactly what the coming weeks would entail, they stepped off the BA flight from Addis Ababa. Dressed in the best clothing that they possessed, it was soon obvious that they were in fact totally unprepared for their bitterly cold and wet introduction to an English winter.
Swiftly stocking up on warm jerseys, socks and shoes and some woolly hats, we took them to the comfortable bedsit rooms that had been prepared for them in North London.
Having showered, in possibly the first hot shower that they had ever experienced, the boys had only the evening to relax before we transported them early the next day to the Maxillio facial unit at University College Hospital London (UCH), where the skilled plastic surgeon, Dr Peter Ayliffe had agreed to operate on them.
In order to keep costs to a minimum, the plan was to operate on both boys using only local anaesthetic. Although this was fine for Mohammed with his cleft lip, it became clear that Hassan’s condition, suffering with the flesh eating disease Noma, was far more severe than at first diagnosed. Dr Ayliffe had after all only seen pictures of the boys up until now. He would have to undergo full-scale operation.
This was a blow for all concerned, not least because it would cost the charity an extra £2,500 in hospital costs, payable immediately!
It should be stressed that Project Harar pays for all medical costs, albeit often at reduced rates, so as not to burden the NHS.
Mohammed’s operation was relatively quick and the transformation extraordinary.
Hassan’s procedure took over seven hours, was very complicated and he lost a lot of blood. He was in a state of shock when he woke up and needed a lot of reassurance that he was going to be okay.
During the following weeks of recuperation, he too made a full recovery. As his scars and wounds healed, it was obvious that his face had improved no end, as had his quality of life.
The doctors were delighted with both of the boys’ rapid progress and their bravery and positive attitudes throughout.
Towards the end of their stay, their strength returned, and finally we were able to take them around London. See sightseeing in London for more. And all the time our manager Sebesebe, who himself had never been outside Ethiopia, looked after the boys’ daily needs with little or no regard for himself.
He slept in hospital with the boys after their operations, cooked and washed for them throughout and kept their spirits high, even though he felt the cold and wet more than anyone.
He is to be warmly congratulated for making this trip a reality.
And so, just before Christmas 2003, the group returned, somewhat tearfully, from the trip of their young lives back to Harar to lead hopefully new and healthier lives.
In Spring 2004, we saw both boys who continue to do extremely well. However, they both require further procedures.
It has to be said that compared to what Hassan went through, Mohammed had a pretty easy time of it. Nonetheless, having to go under the surgeon’s knife whilst wide awake cannot have been a pleasurable experience.
Mohammed had a nasty bilateral (double) cleft lip and palate, but even so, considering the way he looked, he was a real extrovert and always upbeat and happy.
Dr Ayliffe took under two hours to repair a disfigurement that up to now had always caused passers by to stop and stare. We reckon the staring will continue now; from the admiring glances of the girls he’ll be fighting off, due to Mohammed’s newly acquired good looks!
No longer will he be marginalised by his neighbours. Mohammed wants to return to school and learn a proper trade.
Once again, Dr Ayliffe would very much like to see Mohammed in 2004 to repair his cleft palate inside his mouth.
Mohammed was a joy to be with throughout his time in London.
Although in a very alien environment, he behaved impeccably and was a credit to his family.
In 2004 Mohammed is in great shape and looking forward to the future. He has returned to school to finish off his studies, and he now wants to go on to higher education. Project Harar plans to part or fully sponsor him through this. In the meantime we are working hard on organising his second operation to correct his palate. This will enable him to speak properly.
We are in constant contact with Mohammed in 2005, and he has had his cleft palate operation. He is now learning to speak properly with speech therapy.
Hassan was brought to us when we were in Harar in May 2003. Noma had left him with a hole on the left hand side of his face. His nose was caved in and he was very introspective and did not talk or look at us.
Only when he arrived in London was it realised that his jaw was locked shut and that this would give rise to a much more complicated (and expensive) operating procedure. Not only did the surgeon need to block up the hole using surgical ‘flaps’ to rebuild the mouth, but a muscle had to be transplanted from the scalp. Finally the jaw bone was cracked open to give Hassan some movement of the mouth.
After an operation lasting seven hours, Dr Peter Ayliffe announced that things had gone well, but the recovery time would be some weeks. This proved to be the case, but as Hassan saw the fantastic results, his mental state changed dramatically. For the first time in memory, he could talk properly and feed through his mouth, and not through the hole as he had done so previously. This was a revelation to Hassan, as was his new upbeat and happy manner to all of us. He could not wait to return home to see family and friends.
Dr Ayliffe feels that he can do even more to Hassan’s face in the future to improve his looks and would like to see him in 2004.
We saw Hassan in March 2004, and his face continues to heal very well indeed. Both he and his mother are delighted by his great improvements, both physical and psychological. Hassan’s life has truly been transformed and he is being accepted by his community once more.
We saw him again in 2005 and he is improving further.
Jemal was born a normal child to a terribly impoverished family in a remote village 50 kms from Harar. At a very young age he developed a virus such as chicken pox and during the illness his immune system was badly weakened.
The bacteria in his mouth, which normally protects us all from infections started to attack it’s own body. This is rare, but not wholly unusual occurrence. Without immediate but simple medication such as penicillin, one of the awful effects is that it starts to eat flesh, as it did with Jemal. Just as strangely as it started, it stopped. Jemal was lucky, many people die from its continuing effects or from later infection.
This disease is called Noma, and is a terrifying disease of the desperately poor in Third World countries. It disfigures people and blights their lives forever. Because of the way they look, the sufferers, much like with leprosy (although Noma is not contagious), are marginalized and discarded by normal society.
His family was unable to look after him financially. There may also be some superstitious beliefs at work in that people think that he has been so afflicted for a reason, and that he brings bad luck to his family and others around him. For whatever reason, he was left to fend for himself, and he came to Harar.
But he was an outcast even amongst the street beggars. What his life must have been like is unimaginable. Indeed when Project Harar started to aid him, he was initially suspicious and absconded regularly, such was his incredibility that anybody could actually want to take care of him and help him lead a better life.
The opportunity for facial surgery
For the eight months to December 2001, the hotel worker Mekonnen had been working part time for Project Harar looking after the boys with money regularly sent to him from the UK. They were living in simple accommodation, had food and clothes and were comfortable.
In the early part of 2002, a visitor came to see Jonathan Crown’s photographic Exhibition of Ethiopia ‘Comparing Lives’ (see the photography website for images and details). Also displayed was a progress report of Project Harar and what its aims for the boys were, Leasa Merrill saw this and described a wonderful charity called Mercy Ships which had hospital ships that sailed around the world and performed the sort of surgery that the boys needed. She was able to make an introduction to Tony Giles, an English surgeon who worked on the ships. She had worked with him making a TV documentary in 2000.
Jonathan had never heard of the charity but contacted them immediately. It was the opportunity that he had been waiting for, and on further investigation it looked like the perfect answer. The surgeons were very skilled, specialising in facial injuries and amazingly, all operations were carried out free of charge.
Having only seen digital images of the boys, Tony Giles agreed immediately to carry out a series of operations on them on the hospital ship MV Anastasis in April 2002. The ship was docked for three months in Banjul, the capital of The Gambia in West Africa.
The trip from East to West Africa
The logistics of transporting the boys and Mekonnen, who had been looking after them for nearly a year now, across the African continent proved very difficult, costly and time consuming. The boys needed birth certificates, medical reports, ID papers, passports, visas and tickets. For a while it was looking increasingly unlikely that the trip was going to happen due to the countless problems that arose and the bureaucracy encountered.
However, following another lucky break where a further contact was made at an Ethiopian cultural evening at the House of Commons, British Airways very kindly agreed to subsidise part of the cost of the trip via London.
The last piece of the jigsaw fell into place when His Excellency Mr Fisseha Adugna, the Ethiopian Ambassador to the UK, personally intervened to secure UK Visas for the party (which had not been forthcoming) in the nick of time.
The boys came to London on 13th April, stayed for one extraordinary day of sightseeing, and then flew down to the Gambia accompanied by Jonathan Crown. It was during this time that Jonathan got to know the boys for the first time, having previously only spent ten seconds with Jemal and five minutes with Fhami.
On arrival in Banjul, the party went straight to the ship where they were admitted to the ward immediately.
The MV Anastasis and the first operations
First impressions of the hospital on the ship were not good. It was very overcrowded, with simple iron beds virtually on top of each other and it was very noisy. The patients had the most awful deformities and afflictions that Jonathan had ever seen, and there were a lot of nurses rushing about all over the place. It was a very unnerving scene indeed, as the party waited what seemed like ages for a couple of free beds together. The boys were terrified.
Over the coming days, Jonathan’s feelings of discomfort about the ship changed completely. Although the operating rooms and ward had the distinct feeling of being part of the American TV series “Mash”, a rough and ready field hospital on the front line of a war zone, the simple facts were that this was a brilliantly run and efficient hospital, that worked in incredibly difficult conditions. Staffed by wonderfully kind, patient, dedicated and skilful people from the USA and Europe who were all, unbelievably, paying for the privilege of serving on board.
The boys received their first operations on concurrent days
Jemal’s surgery took even longer and was more complicated, an exhausting 8 hours under anaesthetic. When he came out of the operating room he looked barely alive. A huge skin graft has been used to plug the hole in his face. There are around 200 stitches in his face. His nose needed rebuilding and to do this the surgeons performed quite an extraordinary procedure using scalp flaps. In much the same way that one lifts turf in a garden, so a piece of scalp from left to right is taken and ‘relayed’ front to back on his head. This gives the quite bizarre effect, under the bandages of looking like a mohecan haircut with the end of the flap becoming a new nose.
Jemal had to stay like this for nearly a month as the new nose grew blood vessels and the new skin ‘takes’ to his existing face. Then in the next operations, the flap is cut at the forehead, leaving a new nose and the remainder of the scalp flap is relayed from whence it was taken from. To Jonathan, this is the medicine of science fiction, but the technology has been around for sometime now, and it has a very good success rate (90%).
His surviving bottom lip, was stretched to provide a top lip and will be sculptured subsequently. Immediately afterwards he could not eat nor talk through his closed mouth (he was fed by tube in his nose), and had to breath through a tracheotomy in his neck.
Needless to say, once he came round after the operation, he was in a state of panic, everybody was really. He was in great discomfort and pain, much of the facial swelling was post operatic trauma and took a day to take effect. Thus he looked even worse a day after surgery; moreover the ‘come down’ from the anaesthetic acted as a depressant too.
But after a very difficult two days, he began to relax, the nurses began to understand his needs and hand signals, and he realised deep down that all of this was for his own good. It was about this time that he began to smile. It was brilliant.
For obvious reasons, Jemal is far more introspective and quiet than Fhami, he has suffered more for longer, and it will take a considerable time for him to make any sort of mental recovery. Having said that, he is improving every day, and there is every indication that he will be just fine.
Jemal has had three opreations in all, the last two to return the skull flap to its original position, leaving a new nose and mouth, and the final operation was to straighten the nose.
The scarring on his face continues sto heal well. Jemal's face has been transformed from one that was difficult to look at and needed to be permanently hidden from view to one which will allow him to live normally. He will no longer need to cover his face in public.
In 2004 we still keep an eye on Jemal. He is well and looks pretty good. Unfortunately he still insists on living away from home in the streets. Sebesebe makes sure that he has enough to eat and is properly clothed.
Fhami is 12 and led a normal childhood until a fateful day two years ago when just before nightfall is his village 50 kms from Harar he was playing outside his hut.
The previous year had produced a poor harvest, and although there was not a major drought, it had been a difficult period with little food about. The wild animals had found it equally hard to survive and were hungry.
Fhami was brutally attacked by a huge hyena. He tried to run into his home, but the animal caught him and clamped its jaw around Fhami’s head. In an instant his right eye was ripped out of its socket, his skull was also crushed and the attack left his (whole) right ear two cms lower down his face.
Badly disfigured, he was lucky to survive. He had been in pain ever since and his wounds were in extreme danger of infection. Like Jemal, his family, of whom only his mother survives, was unable to look after him so he came to Harar to beg.
For the eight months to December 2001, the hotel worker Mekonnen had been working part time for Project Harar looking after the boys with money regularly sent to him from the UK. They were living in simple accommodation, had food and clothes and were comfortable.
In the early part of 2002, a visitor came to see Jonathan Crown's photographic Exhibition of Ethiopia ‘Comparing Lives’ (see the photography website for images and details). Also displayed was a progress report of Project Harar and what its aims were. Leasa Merrill saw this and described a wonderful charity called Mercy Ships which had hospital ships that sailed around the world and performed the sort of surgery that the boys needed. She was able to make an introduction to Tony Giles, an English surgeon who worked on the ships. She had worked with him making a TV documentary in 2000.
Jonathan had never heard of the charity but contacted them immediately. It was the opportunity that he had been waiting for, and on further investigation it looked like the perfect answer. The surgeons were very skilled dealing with just such facial injuries and amazingly all operations were carried out free of charge.
Having only seen digital images of the boys, Tony Giles agreed immediately to carry out a series of operations on them on the hospital ship MV Anastasis in April 2002. The ship was docked for three months in Banjul, the capital of The Gambia in West Africa.
The boys received their first operations on concurrent days
In a tiring seven hour operation, Fhami had a piece of rib taken to build up his eye socket and cheekbone. He also had expanders put under the skin of his scalp to enable excess skin with hair to grow.
This would be used in the second operation when the broken skin over his damaged ear was cut out, the expanders were taken out and the new skin it stretched over to create a new and full head of a hair.
At the same time his ear was stretched up to its correct position. He also had a damaged eardrum, a specialist is planned to visit the ship shortly and advised further on what could be done in this area.
They also made him a new eyelid, and a glass eye was inserted into the eye socket, but the surgeons discovered that he was paralysed on that side of his face, so he could not open the eye and so they took it out.
His recovery after the first operation was speedy, and his happy nature and laughter filled the ward with happiness and hope. The nurses adored and doted on him.
Fhami’s head although less immediately obvious has also improved markedly. Once the liquid was drained out of his by now strange looking head (it was put in to help grow excess skin on his scalp which would be used to cover damaged areas) and the damaged skin cut out and replaced by newly grown skin, he was transformed. He now sports a full head of hair. His ear has been pulled up to its original position and his right cheek and eye socket has been rebuilt. The wounds continue to heal well and are no longer liable to infection.
In 2004 and into 2005/6 Sebesebe, our manager continues to ensure that Fhami is well looked after. He looks much better than he did. Like Jemal, he insists on living on the streets, but at least he is well clothed and fed, and if he has any medical problems he know he can turn to us for help.
