In October, Samaritan’s Purse brought cleft lip patients from across South Sudan to Juba for surgery. On board ten MAF flights, were 151 passengers including babies, children and young adults and their carers from eight locations across South Sudan. It wasn’t just the patients that were left with beaming smiles.
The medical team of 26 theatre nurses, anaesthetists and surgeons from the US have travelled foregoing holiday to spend twelve hours a day inside an operating theatre at Juba Teaching Hospital. They were able to carry out 120 surgeries over the ten day outreach. More than 700 lives have been transformed in the ten years since the project began 2011.
The Samaritan’s Purse nurses have a mirror ready so the first thing the patients see when they come out of surgery is brand-new smiles. The lucky ones are too small to hold the mirror. Others have waited years or even decades to see the face that is smiling back. No-one really knows why children are born with the condition, which happens when a baby’s lip or mouth doesn’t form properly during pregnancy. Cases range in severity from cleft lip to the medically complex cleft palate. There are no figures on how widespread the condition is in South Sudan or how many adults and children may be living (and dying) with the condition in remote communities, hidden away from prying eyes. In the western world, the condition is diagnosed in the womb and treated soon after birth.
Unmasking a Problem
The first patients disembark at Juba International Airport. Covid face coverings serve a dual purpose, preventing covid and preserving the dignity of children and adults living with a condition that’s believed to be a curse. In previous years, passenger manifests have documented how people living with this condition aren’t always given names – referred to instead by the title as ‘Machiek‘ – which translates roughly as ‘creature.’
Annette shares how the Samaritan’s Purse chaplains, who act as translators, give these patients the opportunity to choose a new name. All the while, introducing them to the loving God who replaces the stigma with blessing. Annette has tears in her eyes as she tells the story of a woman in her seventies who lived her whole life outside the village because of her cleft lip. Excluded from society, she never married and was abandoned by her children when they left home to marry. After her surgery the woman looked forward to meeting her grandchildren for the very first time.
The First Smiles
The day before the surgery, staff check blood count and weight. The simple surgery rarely has complications and often takes less than an hour. This year they have seen more patients with bi-lateral Cleft lip requiring more complex and painstaking surgery. Two theatres with two tables in each are operating for 10 – 12 hours straight.
The surgery is carried out under general anaesthetic. Afterwards, a local anaesthetic nerve blocker is administered to make the patients more comfortable during the first six hours of their recovery. The patients get paracetamol and antibiotics to go home with. The absorbable sutures don’t need follow up care. If a complication arises, the patient can go to the health partner that referred them.
Keep the Smiles Going
To aid with the healing process, babies and toddlers are fitted with special sleeves called ‘no-nos’ to stop them bending their elbows and putting their fingers in their mouths. This is a comfort reflex for many children, which can undo the surgeon’s good work.
It is a scary experience for the children – and their parents. Compared to the rural communities they’re from Juba is a big city. Many have never visited the capital or seen the inside of a hospital before.
One little girl clings to her mother – and refuses to open her eyes as she comes out of the anaesthesia. In the last three days, her world has been turned upside down. Staff keep a close eye as she recovers and prepares for the flight home. It isn’t until she’s safe in the familiar environment of a tukul that she finally starts to relax. The team are happy to hear that she is finally awake and responsive. She is young enough that memories of her surgery will soon fade – although its results will last for a lifetime.
Nyathok & Nyabat
Nyabat, knows first-hand the shame and abuse that her three old daughter Nyakoth will have to live with because of her cleft lip. “My brothers and sisters played with me, but the rest of the children feared and ran away,” she said. Sometimes people wouldn’t eat with her or sit near her she recalls. She is determined that Nyakoth’s childhood will be different. They have come together to Juba for surgery and are returning home together, with brand-new smiles.
It’s the Smiles that Count
Annette loves the cleft lip programme. She’s energised by the long days and enthusiastic surgical team. For the Health Manager, it’s a chance to get face to face with patients and dust off her clinic skills. The results after the surgery are immediate. This is unlike the NGO’s other programmes which require day-in day-out dedication by more than a thousand Samaritan’s Purse workers. They often deliver emergency food security, nutrition, WASH, shelter and health programmes interventions across South Sudan.
As the outreach is happening, people gathering in Glasgow for GOP26 and the SP team on the ground are wading through water that’s waist deep in places, in Unity State, so that people living on the edge of the habitable landscape can receive vital services. Samaritan’s Purse mobile medical teams work in areas that can only be reaches by plane – travelling out by motorcycle, quadbike and even canoe to deliver healthcare. Cleft lip patients like 65-year-old Agok have come from places such as this.
Annette visited an area where the flood water was nearly two meters deep. She recalls the devastation a few weeks later when the handmade dyke protecting communities breached and floodwater swept through villages, destroying homes.
Agok Smiles with Joy
65-yr-old Agok has spent his entire life in a village without access to basic medical care. So determined was he to have the surgery, that Agok walked for eight days and then took a boat for six hours to reach the airstrip and the waiting plane (SP plane). At the hospital, he was happy to see all the babies and children who had also come for cleft lip surgery. “They’re very lucky to get surgery at that age,” he said. “They will not grow up with teasing like me.” After his surgery, Agok couldn’t wait to return home and to greet his family and friends with a new smile, and see their smiles in returned. “The family will have a celebration. The whole village will come.”
Testimonies from some of our Pilots
Tobias Meyer: “It was amazing to fly for Samaritans Purse Cleft lip repair programme. Just to see the difference it makes for kids who otherwise wouldn’t get the chance to have surgery. Today, I had a baby on my flight with cleft lip and wondered if she missed out! Thankfully it’s an ongoing programme and the surgeons will be back next year!”
Raphael Flach: “The flight was very motivating for me because it allowed me to get closer to the people in the communities we are here to serve. When we collect the children to fly them Juba you could see the challenges they face living with cleft lip. When we brought them back again you could really see the difference the surgery has made. During the flight they were happy, smiling, and obviously enjoying themselves. I think most of them had never flown before and it was the first time they’d been in a plane. A nice bunch of passengers to fly. Flying for them gave me joy during a long day of flying!”
Alistair Youren: “It was a real privilege to support Samaritan’s Purse again with their cleft lip repair programme. Flying the patients in is just a small part of the operation but it’s great to be able to support this ministry. Seeing the change in the patients a few days later, when we fly them back home, makes all the hard work worthwhile – it really is life changing work and it’s a real highlight for me to be involved.”
Photos courtesy of Samaritan’s Purse (Kim Rowland). Story by SP’s Annette Bennett.