MAF flies patient Nyandit from S.Sudan to Uganda to access treatment (credit: J. Davies)

On ‘World spina bifida and hydrocephalus day’, we explore how MAF works with OVCI in South Sudan and CURE International in Uganda and Kenya so that sick, isolated children battling these conditions can access the lifesaving treatment they so desperately need.

Spina bifida, which means ‘split spine’ is a condition where the spinal cord and surrounding vertebrae have not fully developed in the womb. Spinal tissue and fluid push their way through the gap to form a sack on the baby’s back.

Jok had surgery at CURE Uganda last August to treat spina bifida (credit: J.Davies)

Given that the central nervous system or ‘neural tube’ comprises of the brain and spinal cord, most children who are born with spina bifida, also have hydrocephalus – a closely related condition where excess fluid on the brain creates pressure inside the skull and causes the head to swell.

Without treatment, which enables the excess fluid to drain away, hydrocephalus can cause blindness, brain damage and eventually death. Likewise with spina bifida, exposed spinal tissue leaves the baby extremely vulnerable to infections like meningitis, which is fatal if left untreated.

Since Raya had a stunt inserted to drain fluid, she has improved (credit: Jenny Davies)

9 /10 people in lower income countries can’t access basic surgery

According to MAF partner CURE International, nine out of ten people from low and middle-income countries cannot access basic surgical care. Left untreated, people with hydrocephalus and spina bifida live a life of pain, shame and isolation, often resulting in an early death.

CURE has hospitals all over Africa including Kenya and Uganda where MAF operates. The latter in Mbale is a global leader in treating spina bifida and hydrocephalus and boasts an 18-bed intensive care unit, 50 ward beds, three operating rooms, and an outpatient clinic.

CURE Uganda – a world leader in treating spina bifida & hydrocephalus (credit: D.Hirwa)

When children are born with these conditions in South Sudan however, there is nowhere in the country to treat them. In a bid to change this, in December 2023, MAF began collaborating with CURE in Uganda and ‘OVCI – La Nostra Famiglia’s Usratuna Rehabilitation Centre’ in South Sudan’s capital, Juba.

Since Dec 2023, MAF’s been flying children to Uganda for surgery (credit: Jenny Davies)

Today, MAF and partners are working together so that children battling hydrocephalus and spina bifida from South Sudan can fly to Uganda to access free, lifesaving surgery.

‘The health sector is our biggest need & road security is a big problem’

A patient’s journey starts at OVCI’s rehabilitation centre in Juba where children present with a range of congenital neurological conditions.

Many patients at OVCI’s Juba rehab centre are referred to CURE Uganda (credit:J.Davies)

It’s OCVI who refers the children to CURE’s hospital in Uganda for surgery and supports them when they return home. Project manager, Paola Fappani, sums up the lack of healthcare in South Sudan:

‘We are the only centre of our kind in South Sudan. We lack many services – only a few facilities can support patients, but these are concentrated in Juba. The health sector is our biggest need. There are a lot of clinical officers, but they’re not well trained. We need neurologists, orthopaedic surgeons and physiotherapists.

‘Surgery for hydrocephalus and spina bifida cannot be done in South Sudan due to a lack of neurologists, but also hygiene is not good enough. The operating theatres and the whole infrastructure is not conducive to having surgery.

‘The main neurological condition we see is hydrocephalus. These are the most urgent cases because without surgery they can lose their lives, so we refer them first. The surgery they receive at CURE Children’s Hospital in Uganda is lifesaving.’

Paola Fappani from OVCI in Juba: ‘The health sector is our biggest need’ (credit: J.Davies)

MAF’s free flights for the children and their families from Juba to Uganda make a huge difference continues Paola:

‘Road security is a big problem in South Sudan, even on the main road to Uganda. Border police are not so nice and sometimes ask for money – some extra bill or they don’t allow them to cross the border. Familes can also be attacked by gangs on the road. It’s better to reach Uganda by plane to avoid security issues.

‘Some of the children are in a hard-to-reach areas where the roads are not ok, so a plane journey is easier – within three hours, they will reach Uganda.

‘Without the help of MAF and CURE in Uganda, it would not be possible to help these children. The money we save on transport means we can help even more children. That is why this collaboration is so important.’

Paola Fappani, MAF partner & project manager for OVCI’s rehab centre in Juba

MAF’s 3-hr flight from Juba or a 2-day road trip to CURE Uganda? (credit: J. Davies)

In July, MAF flew 9 babies from S. Sudan to Uganda to access treatment (credit: D.Hirwa)

As a result of the collaboration, MAF flew nine babies from Juba to neighbouring Uganda in July this year. Without MAF, it would have taken the families two days to get there. Travelling long distance via bumpy potholed ridden roads is simply not an option for extremely sick children.

Godfrey from South Sudan

Meet Godfrey and his mum Ide (credit: Damalie Hirwa)

It was the second time MAF had flown eight-month-old Godfrey to receive treatment in Uganda. Godfrey and his teenage mother, Ide, first flew there with MAF in March.

Despite his discomfort, Godfrey had been unable to cry for three months to express his pain. He couldn’t breastfeed and drank milk from a spoon, which left him severely malnourished.

Unfortunately, the hydrocephalus had worsened. Before the second round of treatment, his brain held an extra 10 millilitres of fluid compared to his first diagnosis, making his head 6cm larger.

Due to hydrocephalus, Godfrey’s head swelled another 6cm (credit: Damalie Hirwa)

If Godfrey’s condition was detected in the womb and he was treated immediately after birth, the chances of him living a normal life would be much higher. But Ide simply didn’t have that option available to her in South Sudan she sighs:

‘I never attended any antenatal visits during my pregnancy.’

Dr Okello from CURE Uganda operates on Godfrey (credit: Damalie Hirwa)

Dr Emmanuel Okello, a surgeon at CURE Children’s Hospital in Uganda sums up the situation:

‘Preterm babies are prone to having this problem. If managed early, the child can be well. The major issue is that mothers come late. Neonatal sepsis attacks the brain cells, which are responsible for absorbing the excess fluid back into the blood stream. All this affects the child’s development.

‘Godrey’s development is going to be very slow. We will have to work on his nutrition, but he also needs regular physiotherapy because his head is too big. Before anything, we are going to tap fluid from his brain to relieve him of some pressure.’

Amor from South Sudan

Meet Amor and her mum, Akuok (credit: Damalie Hirwa)

Baby Amor and her teenage mother, Akuok, were on the same flight.

Amor showed signs of hydrocephalus when her head begun swelling three months after birth. Akuok didn’t know what to do:

‘When I saw my baby’s head expanding, I asked God, “Why me?” My husband couldn’t help because he doesn’t have the money to afford treatment.’

In addition to the debilitating health issues, many parents also have to grapple with the stigma and shame surrounding the physical characteristics of the condition. Dr Okello explains:

‘Some communities think it’s witchcraft and some babies are even discarded in trash cans due to ignorance. In my village of Agago (northern Uganda), babies with this condition are drowned, but the situation is now changing.’

Tim Erickson welcomes 1st 5 babies in Dec 2023 thanks to collaboration (credit: CURE)

Without MAF, treating South Sudanese patients would be very difficult, says Tim Erickson – executive director of CURE Children’s Hospital in Uganda:

‘We appreciate the collaboration we have with MAF. It would be very challenging getting patients down here from South Sudan by road, as it’s very exhausting and an additional burden on them. MAF also helps us bring these patients more urgently and we are very grateful.’

Tim Erickson – MAF partner & exec director of CURE Children’s Hospital in Uganda

Given from Kenya

Meet 8-year-old Given from Lodwar, north-west Kenya (credit: Paula Alderblad)

Not only does MAF fly patients to hospital to access lifesaving surgery, the charity also flies orthopaedic specialists out to remote areas to assess and treat patients for free within their home communities.

In February, a team from CURE’s Kijabe Hospital in Kenya were flown from the capital Nairobi to the isolated areas of Lodwar and Lokichar in northern Kenya for a two-day mobile medical clinic.

Without MAF, the journey from Kijabe would take at least 12 hours by road.

Eight-year-old Given from Lodwar uses crutches because he has a range of conditions including hydrocephalus and spina bifida. He has undergone several operations already, but his conditions continue to affect his posture and cause fatigue.

Dr Theuri fits Given with special footwear before visiting CURE Kenya (credit:P.Alderblad)

Prior to MAF’s partnership with CURE in Kenya, Given and his mother Salome would endure a 12-hour road trip from Lodwar to Kijabe, just to access treatment. Sometimes Salome couldn’t afford the fare and would have to miss Given’s appointments.

Those days are gone. Given’s life has been transformed thanks to MAF’s mobile medical clinics with CURE. Salome breathes a sigh of relief:

‘I am happy that CURE’s mobile clinics have significantly reduced travel costs by bringing doctors closer to home. Attending clinics is no longer a financial burden and allows consistent care and monitoring of Given’s progress. It is my wish to see him walk like other children.’

Salome – mother of Given who has benefited from the MAF/CURE partnership

During the clinic, Given was seen by orthopaedic surgeon Dr Joseph Theuri who fitted him with supportive footwear.

There are plans for MAF to fly Given to Kijabe for x-rays. There, a neurosurgeon will assess the alignment and condition of his spine, which will inform his treatment for spina bifida and hydrocephalus.

Faith Susan, MAF’s country director in Kenya, cannot emphasise enough the vital role that MAF plays in transporting medical teams to remote parts of Kenya:

‘CURE is dedicated to caring for children with orthopaedic disabilities in remote locations where healthcare is limited. Thanks to MAF transporting doctors, nurses, and physiotherapists to these areas, children who are suffering can receive specialised treatment that would otherwise be unavailable. This collaboration ensures that these vulnerable children receive the critical assistance they urgently need.’

MAF, CURE & OVCI will serve remote children desperate for surgery (credit: Jenny Davies)