These kids can be mocked, bullied, even stoned, kept away from school, sent into the wilds

News & Analysis

22nd November 2014

Prepare yourself for what you are about to see, I tell myself, waiting for the night flight to Ethiopia — as if this is possible, as if any western adult could be ready to face children defaced by the most severe disfigurements imaginable in one of the poorest countries on earth. Nothing could have prepared me. But it was not their faces that would come to haunt me.

Fourteen hours later, we (my wife Anwen, and workers from Project Harar, the charity of which I am patron) — are hurtling through the grimmest part of Addis Ababa in the back of a van. Dirt and chaos and crazed traffic abound. The capital is in the midst of a growth spurt: awkward, unlovely, unfettered by regulation. We reach a roundabout and there ahead is the government-run hospital where the charity’s mostly British doctors operate on the youngsters.

We stop, get out, and with scarcely a breath (the high altitude is literally breath-taking) are whisked through a series of higgledy-piggledy pathways weaving through ramshackle buildings. Visitors loiter in the warm open air. To our left is a drop in the ground with the mouth of a wide, gaping water pipe. There isn’t always water here. The week before they didn’t have water for three days. On only one of those did they stop operating.

Moments later, as we head up one of the pathways we meet five patients, leaving one of the buildings. It is not hard to identify the Project Harar patients. They all wear white veils draped around their heads, given to them by the hospital — partly to keep fresh wounds clean and partly to keep their disfigurements covered. That morning they were all operated on. At the front a boy, maybe ten, conceals post-op swelling that consumes much of the left side of his face. As Jonathan Crown — the British businessman who set up the charity — chats with a nurse I look at the boy. He looks at the ground. Not once does he raise his head.

Some of the kids, we are told, have been attacked by wild animals. Some have cleft palates, others tumours the size of grapefruits, left to inflate and invade their faces. Some have a condition called ‘noma’ – a bacteria triggered by malnutrition that destroys flesh: noses, cheeks, lips. Sufferers can be left pushing food through the holes in their faces in order to eat. Some of them cannot talk.

Inside, we move from cramped cubicle to cramped cubicle — rags strewn from windows as makeshift curtains — visiting patients pre- and post-surgery. First, a boy, 14, with a giant tumour protruding from his mouth. The smell of the infection from the growth is overwhelming: a putrid, fetid stench that would ensure no one goes near him. He too stares at the floor, head down, shoulders crumpled. In just a few hours his torment will end thanks to a scalpel, a team of volunteers and a procedure than on average costs the charity just £250.

Project Harar children after their operations.  Achiyade, the young girl in pink, had been mauled by a hyena
Project Harar children after their operations. Achiyade, the young girl in pink, had been mauled by a hyena

Next, a three-year-old little girl called Achiyade, ravaged by a hyena, lying on a stripped mattress, still out for the count after surgeons reconstructed the left side of her face. Then a young woman whose nose, obliterated by a tumour, was rebuilt using bone from her rib and skull. When lead surgeon Professor Mark McGurk enters she kneels, bows, hands on the floor, a gesture of gratitude no one in the NHS ever sees. She hasn’t been shown her new face yet. One of the nurses asks if I want to be here when she is given a mirror. No, I say, that seems intrusive: she deserves privacy; she will need time on her own to adjust to her new face. Her old one caused her enough pain.

The shame of the patients — or, really, the shame hung on them — is visceral and extreme. A Project Harar doctor explains: to be disfigured is to be considered demonic, possessed, cursed, and thus worthy of ostracism. Kids can be mocked, bullied, even stoned, often kept indoors, away from school and other children. Some are sent out alone into the wilderness to tend animals, indefinitely. Many don’t know what it is to be hugged or touched or consoled. Few have friends.

What is inescapable, because it rings out – a terrible peal – is the isolation of these young people. I thought I knew loneliness. My own early experience of it helped bring me into some of my most known and most victimised characters: Joseph Merrick in The Elephant Man, Quentin Crisp in The Naked Civil Servant, Timothy Evans in 10 Rillington Place, who was wrongly hanged for murder. They have all stayed with me. But I have never known loneliness to be this palpable; an electromagnetic field all around each child. Except, for them, it does not draw others to them, it repels. And it is this that haunts me still — not the growths and gaps in faces, but the basic truth about us all: above all, we need contact, connection with others. Only connect, indeed. Without that, one has nothing.

And these children have nothing, except for this: the knowledge that the operations will end their ostracism, returning them anew to their rural villages. That they are the lucky ones, that their future will now be manageable, that they will be able to make friends for the first time, go to school, get married.

Project-Harar

After surgery, patients are brought to a rehabilitation centre in the countryside, an hour’s drive from the capital. The following day, we head out there, trundling on bumpy roads amid lush, gorgeous landscape. The care facility looks like a huge suburban bungalow. There’s a grassy oblong out the front. Boys in bandages play football. Most of the patients sit quietly, heads wrapped, on the peripheries of the buildings. They come here for at least a week, sometimes several, before and after their procedure. With disease rife in Ethiopia and sanitation and running water in short supply, the chances of post-op infection are high. British nurses, again volunteering during their annual leave, tend to them. They dress their wounds, feed them up, hug them, prepare them for a new life. For many kids, it is the first time they’ve met other children who understand.

As I sit with some of the younger ones, colouring in, they seem so delighted with the attention it reminds me once again how much our faces affect our lives — how others respond to us, and how close people want to come. If destroyed by disease, accidents or genes, so too, for many, are the chances
of happiness. As we leave I catch sight of Achiyade from yesterday, recovering but running around and laughing, regardless. Here, in a land of abject poverty and malnutrition, in a country rising up, investment fuelling rapid growth, with thousands flocking from fields to cities in search of work and opportunity, she now, thanks to £250, stands a chance.

What is the noma virus?

Noma is a rapidly progressive, polymicrobial, opportunistic infection that occurs during periods of compromised immune function.

Reported predisposing factors include:

  • Malnutrition (particularly A and B vitamins) or dehydration
  • Poor hygiene, particularly oral
  • Unsafe drinking water
  • Proximity to unkempt livestock
  • Recent illness
  • Immunodeficiency diseases, including HIV/Aids