A reason to smile in South Sudan

A reason to smile in South Sudan

When Samaritan’s Purse repairs a cleft lip in South Sudan, they are changing a life. The procedure, which takes less than an hour to perform, transforms the future for children and adults who are ostracised and hidden away.

Normally, an aeroplane is for the big men in the community, but when the plane comes to pick up those who are the least, the rejected become the VIPs.  

Story and photos by Thorkild Jørgensen.

In April, four MAF pilots flew 22 separate flights and spent 32 hours in the air to bring cleft lip patients and their guardians to Juba from regional towns. By the end of the week, the international team of surgical volunteers had averaged an impressive 20 cases a day and completed 130 surgeries. 

‘It’s an honour to be the programme manager,’ said Samaritan’s Purse’s Karen Daniels, with a big smile. ‘I have the best job in the world because I get to see instantaneous transformation, which is beautiful.’ 

‘We have a tremendous team! It is an honour to serve with these fine people who often come back year after year to this tough programme.’ Karen Daniels, Nurse Manager, Samaritan’s Purse

Karen co-ordinates the cleft lip programme remotely from Canada, having spent the best part of a decade working as a nurse in Juba. She was asked to start the programme in 2011 after a paediatric surgeon highlighted the need. With assistance from a South Sudanese surgeon, Karen helped identify Juba Teaching Hospital as the right location. Now, for a week each year, patients arrive in the capital from 12 locations across South Sudan - flown in one day, have surgery the next, and go home the day after.

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Fighting stigma with surgery

Cleft lip occurs in one in every six hundred births in South Sudan, and every year more babies are being born with the condition which can be easily corrected with surgery. Until recently, few got the chance and instead were forced to live with the stigma of the facial disfigurement, which often leaves them vulnerable to horrific abuse.

When Samaritan’s Purse began their cleft palate treatment programme in 2011, they were treating patients as old as Sixty-five. Eight years and six-hundred surgeries later and the oldest new referrals are now in their forties. The majority of patients they see are children and babies with their whole lives ahead of them.

‘What really stood out for me was how happy the kids were going home.
They didn’t stop smiling!’ Alistair Youren

Tremendous teamwork

The international team of 20 medical volunteers bring expertise in surgical sub-specialties including anaesthesia, nursing, speech pathology and logistics. Working alongside them are two South Sudanese surgeons who are training to continue the surgery after the team have gone. Supporting the medical team are a team of nine South Sudanese chaplains who pray with the patients before surgery and serve as translators. ‘We have a tremendous team,’ says Karen enthusiastically. ‘It is an honour to serve with these fine people who often come back year after year to this tough programme.’

‘It’s an honour to be the programme manager. I have the best job in the world because I get to see instantaneous transformation, which is beautiful.’ Karen Daniels, Nurse Manager, Samaritan’s Purse

Praying for provision

Conditions are challenging. The hospital is so under-resourced that Samaritan's Purse bring everything they need for the surgeries; from medical supplies, down to fuel for the generator and water for the tanks. ‘The team prays together every morning before we come to the hospital because everything that can go wrong in this country will go wrong unless we pray for divine intervention,’ Karen says.

‘Prayer makes everything go smoothly, more patients get a chance, and supplies last although more patients than planned are being treated. We have even been granted favour at the airport. Considering the bureaucracy here it’s miraculous!’

Karen reels off a long list of arrangements that must happen to enable to programme to run smoothly and to time. ‘The manifests have changed all through the week,’ she says, ‘because we often don’t know the exact number of passengers at different places before we get there. We might have been told to pick up fourteen and then it turns out that there only seven!’

A smile for Captain Brian

Insecurity and the state of South Sudan’s roads means there is little other option than to transport the patients to and from their surgery by plane. ‘We knew when we started the programme that mobilisation of patients was going to be a problem. We weren’t sure how to get them to hospital in Juba,’ Karen explains.

The aviation programme was developed by Samaritan’s Purse’s pilot Brian Stoltzfus in response to the need. Brian, who Karen describes as ‘the heart and soul of the programme,’ was tragically killed in a plane crash in early 2019. But he is remembered with every successful surgery. ‘On the back of the T-shirts that we give the kids, it says, “A smile for Captain Brian,”’ Karen shares sadly. 

Remote referrals

Medical NGO’s serving in different areas make sure people know the surgery is available if they want it. ‘When people come to Goal’s clinics, we tell people with cleft lips that it is not very complicated to correct with minor surgery,’ explains Laurence Owich Koyan, Area Health Manager at Goal International. ‘If they are positive to the idea we register them and report to Samaritans Purse that we have patients for the next cleft lip outreach.’

Two of his charges from IDP camps in Melut county signed up for surgery last year, but had changed their minds at the last minute. They are back again this year because, after seeing the results of the ones who returned from Juba, they decided to have surgery after all. Former patients are the programme’s best ambassadors.

Flying extra miles for smiles

The children are well taken care of while they’re in Juba. ‘Everything is provided for them,’ Karen explains, ‘we feed and accommodate them, they get their surgery, they get a T-shirt and a Bible or picture Bible.’ 

When it’s time to leave they are sent home with paracetamol and antibiotics to continue their recovery. Absorbable stitches mean they don’t need follow-up care, unless there’s a complication. Even then the lip usually just returns to how it was, and they are invited back next year to have the surgery again.

‘The difference physically was stark between those arriving and those departing,’ smiles MAF pilot Alistair Youren who flew some of the patients. ‘What really stood out for me was how happy the kids were going home. They didn’t stop smiling! Their parents were clearly relieved to be going home and grateful for what had been done.’

Every smile matters

Many of this year’s patients were too underweight or poorly to have the surgery last year. Next year 40 patients, who were turned away this year will get their turn. Patients will from arrive an increasing number of locations as new partners are identified to refer and help with aftercare. Eventually, as facilities and security improve, more complicated cleft palate surgeries may even be possible.  

But for now, the ability to combat stigma with relatively straightforward surgery is the what keeps Samaritan’s Purse returning year after year and continuing in the face of insecurity and attempted coups. The steady stream of smiles they see ‘is beautiful,’ Karen says.  

Last year the very first patient to receive cleft lip surgery in 2011 returned to visit the team. Eight years after her successful surgery – the nine-year-old schoolgirl has the same dreams as other girls her age and none of the stigma of disfigurement. When she grows up, she wants to be a doctor. 

‘The team prays together every morning before we come to the hospital because everything that can go wrong in this country will go wrong unless we pray for divine intervention.’ Karen Daniels,  Nurse Manager, Samaritan’s Purse