Fifteen years ago, when Christoff and Tarryn Bell fell in love with a severely ill baby in a KwaZulu-Natal orphanage, they had no idea this would kickstart a journey which would see them caring for numerous abandoned children with life-limiting illnesses.
It all started for Christoff Bell, a medical doctor, and his social worker wife, Tarryn, when they met baby Ncami, in the Mseleni Children's Home in 2011. At the time, Christoff worked at Mseleni Hospital in a remote part of KwaZulu-Natal near the Mozambique border.
Ncami was Christoff's patient in Mseleni's paediatric ward. She had spent the first year of her life in Manguzi Hospital. She had Down Syndrome, severe inoperable congenital heart disease and hydrocephalus. Her mother died during childbirth from AIDS-related complications and her father was unknown.
"I first met Ncami when I hosted a Down Syndrome awareness day," says Tarryn. "This gorgeous one-year-old was hiding behind the children's home carer who had brought her to the event."
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The Bell couple, driven by their strong Christian faith, were both taken with Ncami and applied to be screened to become weekend parents to her and soon after started the screening process to adopt her.
"For six months, we partially cared for Ncami and tried everything in our power to find help for her. But she needed a full heart and lung transplant to survive and that was simply not possible at the time or in South Africa for a child with her social background and with Down Syndrome," says Tarryn.
Ncami died of heart failure six months later. The devastated couple knew this would not be the last child they'd "love and lose".
This was also their introduction to the huge shortage of palliative services, specifically for orphaned and abandoned children in South Africa.
Starting a hospice
After seven years at Mseleni Hospital, the Bells, who are originally from the Western Cape, moved to Ingwavuma in 2017 when Christoff took up a position at Mosvold Hospital. Their biological daughter, Illy, was born in 2014 in Mseleni, and, the following year, they adopted six-month-old Joshua, an orphan from the Eastern Cape with Down Syndrome and autism. Their other biological daughter, Sienna, was born in Ingwavuma in 2019.
The Bells had been in Ingwavuma for a few months when they received a call from a child-protection unit in Johannesburg, asking if they would adopt a little boy, Sibusiso, (nicknamed Si) who had been found abandoned near the Soweto stadium. He had Edwards Syndrome and was nearly dead.
The couple fetched Sibusiso and, days later, another abused and seriously ill baby joined them. Before long, they were caring for six abandoned children with life-limiting conditions in their small house, paying for everything out of Christoff's hospital earnings. With the dream of opening a children's hospice, they started training local women, mostly widows, to help look after the children.
In 2018, the Bells opened the Butterfly Palliative Home from their mountaintop homestead in Ingwavuma, providing in-house and home-based care services to babies and young children with life-limiting conditions.
"When we started Butterfly home for the first time, it was a slightly daunting task as I was not really sure what we were getting ourselves into. But I knew it was what God laid on our hearts so I just knew to be obedient," says Christoff.
By 2022, after purchasing land next to their home and using funds they had raised from friends, family and donors, they started operating from a larger, 12-bed hospice. As more and more people contacted the Bells for help, it became clear they were the only in-patient home in the province providing care to terminally ill babies, and that there was no specific hospice for children besides the Umduduzi hospice in eThekwini which provides paediatric palliative care consultations but is not an in-patient facility.
"Kids from all over the country got sent to us in the middle of nowhere, because they had no other place to go," says Christoff.
In 2025, the second Butterfly Palliative Home opened in Empangeni. They say the two Butterfly Palliative Home facilities are the only such registered children's hospices in rural KZN, and just two of five in South Africa.
"As we stand now, Butterfly has two out of five dedicated children's hospices in South Africa. The others are Stepping Stone hospice in Johannesburg; Lambano in Johannesburg; and the Sunflower children's hospice in Bloemfontein," says Tarryn.
A visit to Butterfly's Ingwavuma hospice
Ingwavuma is a predominantly isiZulu-speaking area in the lush green Lebombo mountains. The area, near the eSwatini border has high rates of unemployment and poverty.
On arrival at Butterfly, office manager Belinda Milner tells Spotlight the 12-bed home currently houses eight children. The home had four deaths in December. "It was hectic for the carers; they're trying to debrief before taking on the next babies. We cannot keep up with the demand for palliative care," says Milner.
Between the Butterfly facilities in Ingwavuma and Empangeni, there is capacity for a total of 20 in-patients, and, at any given time, they are working with between 10 and 20 home-based patients from each facility.
Butterfly director and house mother, Doris Ntuli gives us a tour of the house, saying 18 or so carers are employed here on a rotational basis.
She shows us a spotless kitchen, bathrooms, and cosy dormitories - one for girls and one for boys - a large communal area, and the classroom. There are staff offices and indoor and outdoor play areas.
There's a separate therapy and clinic room, a doctor's consulting room and, just outside it, a large cupboard with all the medications used to treat the children.
There's a small 'end of life' room, a cosy space containing a cot, with flower murals on the walls. A thick blanket against the window to cut out bright light.
"This is where we bring a child who is very, very sick and is passing away. We place them in here for privacy and we give them love," says Ntuli.
'I will try'
Ntuli is a widow with four children and started as one of three carers at Butterfly in its early days, working her way up to becoming house mother and director.
"Tarryn trained me to do everything: to work with children with Down Syndrome and brain damage, identify the signs in different illnesses, support children who cannot sit on their own, and to communicate with vulnerable children. She said: 'we are going to be working with kids who can die at any time ...' and I said: 'OK, I will try'."
Ntuli recalls the day when Bell brought Sibusiso home. "I opened the blanket and was shocked." She says he was breathing with difficulty and his hands were clenched.
"I started looking after him, and I got so close to him. I'd arrive every morning and say: 'Hello Si, I'm here.' He knew my voice. After a while, he started smiling."
Ntuli also recalls Sibusiso's last day. "Dr Bell and Tarryn came over and told us to prepare our hearts because Si could pass away at any time," she said. "It was about four o'clock when he died. The carers were praying with him. The next shift was coming at five. We wrapped him in a blanket so the other carers could come and say goodbye."
Butterfly's philosophy is to give children the best they can while they still have them. "We focus on them as children first, and sick children second. We make sure they live well, by managing their pain and giving them something to look forward to," says Tarryn.
"Children with palliative care needs are neglected in South Africa. It's a poorly recognised field. All children deserve a quality of life till the day they pass away," Christoff adds.
Maintenance is key
Outside, in the garden, Spotlight meets Butterfly's maintenance manager, Nhlanhla Ndlovu. He's in an animated discussion about a broken pressure pump with Neil Coetzee, one of Butterfly's directors. Ndlovu says his job to ensure things run smoothly at the home, like ensuring there's always electricity because some children require oxygen. Loadshedding was a huge challenge, he says, but now they have solar panels and generators.
Passing his Bible from one hand to the next, Coetzee, a pastor at the nearby Zonki'Zizwe church, says he loves children. He and his wife have two biological and eleven adopted children, who were mainly AIDS orphans.
As Butterfly's chaplain, he visits twice a week to see the children and pray with the staff. "This can be a stressful environment to work in." He's also there for readings and prayers for the burials when children pass away.
Originally from Pinetown, Coetzee says he moved to Ingwavuma 20 years ago. "It's the people I love. They are warm. Other people won't laugh about what we laugh about, like the fact that it's taken the guys five years to fix the road."
Meeting the children
There are eight children in the Ingwavuma hospice when we visit. The kids have conditions ranging from severe brain damage to heart failure, cerebral palsy and Down Syndrome. One child is unable to walk and has no feeling from the stomach downwards.
One of the children, born after a teenage brother allegedly raped his younger sister and who was rescued by Butterfly after being given up to the state, came close to death three times last year. One child, we're told, needs oxygen regularly and could die at any moment.
It's hard not to brace oneself for heartbreak when meeting vulnerable children. But walking into this haven of care and being met with such quiet love and innocence is an almost otherworldly experience. One of hope and joy. Humanity.
A little boy rushes over to welcome us. It's a slow rush, as he's using a walker with a car number plate attached. He and his friend, bubbling with excitement, show us the Butterfly vehicle which, in a few days' time, will take some children to Spur restaurant in Pongola. There's a playground with a trampoline.
These are inseparable friends, we are told. The little girl constantly checks the boisterous boy's behaviour. Ironically, on arrival at Butterfly, both children were given mere months to live. Photographs of them at the time, which Tarryn shows us, would make anybody weep. But life at Butterfly has turned them into flourishing children, albeit in palliative care.
In the communal living room, Spotlight meets some of the carers. Cebelihle Mlambo, holding a young girl on her lap, invites us to join her on the couch. "Come and sit here. This little one can't see you. Her brain is damaged. But she can hear you if you talk to her." Mlambo says cheerfully: "I say, 'hello, my child. I am here.' She smiles because she knows somebody's playing with her."
Next, Spotlight visits the classroom where teacher Nokuthula Mngomezulu is working with a small group of children. She has been here for three years and uses the Montessori method of education. "I don't treat them like sick children," says Mngomezulu. "If you want to feel love, this is where you'll find it."
Spending a few hours, we find it's a hive of activity with clear routines of mealtimes, bath times, and bedtimes, interspersed with treatment times where each child is closely monitored and treated for whatever condition they have.
How children arrive at Butterfly
Referrals to Butterfly can only be made by doctors or social workers, after they've decided a child's condition has deteriorated to the point where there are no options for medical interventions and that palliative care is needed. The referring doctor suggests a medical regime for the child and the hospice follows strict palliative guidelines for treatment and pain management.
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"We get referrals from hospitals from all over South Africa," says Tarryn.
"Our multi-disciplinary team includes medical doctors, a range of therapists, social workers, a pastor and educational and developmental specialists, all working together to provide holistic end-of-life care, with consistency and love," she says.
'Never gets easier'
Besides working with the children, social worker Nokwazi Ndlovu's job is to look after the emotional wellbeing of the Butterfly staff. "It can be really hard for them because they grow to love these children," she says.
Working with severely ill children is challenging enough, she says, but watching them die never becomes easy.
"We know all the symptoms of when death is approaching. There are signs, like the child's eyes become dilated or they close their eyes. Their breathing starts to rattle. We use the monitoring machine to watch the heart.
"Even though I know it's coming, I am never prepared enough. The carers hold the child and show them love. We sing and pray," she says.
When a child dies
Once a child has passed away, the entire Butterfly team becomes involved, from taking the body to Mosvold Hospital to complete the necessary legal documentation, to supporting the burial process and providing debriefing afterwards.
"At the mortuary, we bathe and dress the body and put the body in a coffin. Then Nhlanhla is outside waiting for us in the car, and we go to the graveyard. Pastor Neil reads the Bible and prays. Tarryn says something and I say something, then Nhlanhla and his team dig a hole to bury the child," says Ndlovu.
The Mosvold Hospital burial site, originally created for missionaries, is now used to lay children to rest.
"It's very much part of the healing process for our staff in Ingwavuma to say goodbye and give a dignified burial to each child whom they loved and cared for so tenderly," says Tarryn.
The Bells dream of having Butterfly Homes across South Africa.
"Any family and child in need of children's palliative care services should have access to these specialised services," Tarryn says.
Christoff adds: "We are fighting to offer this service, but we cannot do it alone. I hope that more people in positions of power recognise this and come alongside us to give dignity back to children who many may have given up on."
Note: In Spotlight's Rural Heroes series, we tell the stories of people working at the coalface of rural health. Besides platforming these remarkable individuals, the series also aims to increase understanding of the unique challenges of offering healthcare services in rural areas.
