New palliative care option for Cape Town kids

Many young patients are verbally impeded, so art therapist Angela Rackstraw help them communicate through drawings. Photo: Joyrene Kramer

On a leafy street in Rondebosch, Cape Town, Rohan House is taking shape. For children’s palliative care specialist Dr Michelle Meiring this is a dream come true.

The seven bedroom, five-bathroom double-storey property will soon be demolished and rebuilt to municipal specifications. Upon completion it will offer a first of its kind service in Cape Town: a hospice house with eight beds for sick or dying children, and additional rooms for their families.

The project is spearheaded by Paedspal – Michelle’s paediatric palliative care NGO founded in 2015 – and is funded by the Rohan Bloom Foundation set up by Rodney Bloom, the father of young Rohan who succumbed to cancer in 2016.

Making the paedspal dream a reality, Dr Michelle Meiring. Photo: Joyrene Kramer

During 14-year-old Rohan’s final days, Michelle supported the Bloom family at the Red Cross Children’s Hospital in Cape Town and two private hospitals in the city. Rodney recalls the trauma: ‘In Rohan’s final days we would sleep on couches outside the ward. There just weren’t facilities for the parents.’

Now, Rodney wants his son’s legacy to live on through this gift to other families suffering similar heartache.

Situated 1.5 kilometres from the Red Cross Children’s Hospital, Rohan House will offer specialist round the clock palliative care to children, with accommodation for their parents. There will be counselling spaces and therapy rooms – aromatherapy and art therapy – and playrooms. And a garden for patients and their families to relax outside.

Michelle adds that the facility will offer ‘respite care’ too. ‘This means parents who are absolutely exhausted will be able to bring over their chronically ill children, while they take a break,’ she says. ‘Knowing that their kids are properly looked after.’

One set of parents who will benefit from Rohan House are Nashrullah and Tasheeq Jansen, who live in a wendy house with their three young daughters in Belhar, on the Cape Flats. Their youngest daughter, Jehaan (5), has various debilitating conditions, including Sturge Weber Syndrome. Jehaan is one of Paedspal’s outpatients.

Nashrullah Jansen, and her daughter Jehaan (5) who is an outpatient at Paedspal. Photo; Joyrene Kramer

Both Nashrullah and Tasheeq are unemployed, as looking after Jehaan is a full-time job. They are often at their wits end, and don’t know what they would have done was it not for palliative care and access to medication provided by Paedspal.

‘Jehaan needs a lot of attention from all of us,’ says Nashrullah. Inside their home, she is seated on the bed which the family of five share at night. ‘When Jehaan is in pain, nobody sleeps. There are days when you can’t touch her, you can’t clean her, you can’t pick her up,’ she says. Nashrullah goes on to show us Jehaan’s medication; it fills a small bucket.

‘It’s one of the worst things,’ adds Tasheeq. ‘I’ve had to take a lot of sick leave, to look after Jaheen, so I lost my job. I’m struggling to find work on Gumtree, it’s not easy.’

We make the trip to Belhar and back in Paedspal’s bright-painted bus, driven by Humbert Kordom.

Back at Paedspal’s rooms, based at the Rondebosch Medical Centre,

children’s drawings line the walls. Many young patients are verbally impeded, so art therapist Angela Rackstraw help them communicate through drawings. One young cancer patient’s drawing of a boy reflects his anger.  ‘I will kick you in the face,’ reads the speech bubble. ‘I am sad. I love him,’ reads another drawing.

Palliative Care Policy not implemented

Inside Michelle’s office, we are discussing the state of paediatric palliative care in South Africa. From 2016 to 2019, she served on the Department of Health’s Palliative Care Policy Task Team, which finalised a national policy in April 2017. However, it was never implemented. ‘It seems the plan is not being implemented because of financial constraints,’ she says. ‘A budget was created but not approved.’

A major challenge is that the Department of Health is continuously restructuring. ‘There are just so many competing priorities,’ says Michelle. ‘And only a finite amount of budget. Basically, you’ve got to take something from Peter to give to Paul, you know.’

Then, there is the added challenge of unsynchronised provinces. ‘We might try to synchronise things nationally,’ says Michelle. ‘But the provinces have their own autonomy when it comes to resources. So it all depends on access to medication in a given province; their resources, how their provincial budget and spending is going.’

Meanwhile, millions of South African children with incurable conditions are suffering unnecessarily. ‘I had a patient last year, a four-year-old boy, with a type of cancer called neuroblastoma,’ says Michelle. ‘After initial treatment, the cancer came back, growing in the confined space between his spine and stomach, causing unbearable pain. His mother was a police officer. A strong woman who had seen a lot, but she was struggling. After several weeks, using every available drug I managed to get the pain under control, and he died a peaceful death.

‘A colleague in Durban asked for advice on managing a similar case. She didn’t have access to half the drugs I had at the Red Cross Children’s Hospital. The child died in excruciating pain. The difference between my patient’s relatively good death and the nightmare one of the Durban child is access to proper pain relief within an effective public health care system.’

Michelle co-founded CHOMP (the Children’s Homes Outreach Medical Program) in 2002, which became Big Shoes in 2006. Big Shoes provided specialised children’s care at hospices, hospitals, and at community level; also facilitating the adoption of orphans. The organisation had branches in Johannesburg, Durban and Cape Town.

In 2012, Michelle stepped down as chief executive officer at Big Shoes, in order to focus on clinical work. ‘I was sick and tired of fundraising at that point,’ she recalls. ‘I just wanted to go back to practicing and being more of a doctor than a fundraiser.’ Sadly, the man who replaced her would go on to defraud the organisation of R80 000.

‘Around about the middle of 2012, my Joburg bookkeeper came to me with some stuff, irregularities,’ says Michelle, sighing. ‘We were very fortunate that Judge Edwin Cameron was a patron of Big Shoes. He helped us with legal advice and we eventually got the money back.’

But the scandal rattled funders, locally and abroad. ‘We were very transparent about it all,’ says Michelle. ‘The saddest thing at that point was that we were up for an international award from the Stars Foundation. They give awards to NGOs in Africa and in Asia. We were one of four finalists in the competition, actually we were pretty sure to win. The prize was going to be a million pounds. Well, on the eve of the Stars Foundation people coming to Johannesburg to visit us, news of the fraud was in the news. They couldn’t let us win. Our reputation was damaged. Our biggest funders started doubting us, starting to pull out their funds.’

Soon after, Big Shoes was forced shut. At the time, this was described as ‘devastating,’ ‘tragic,’ and ‘a disaster’ in the field.

Fortunately organisations would rise from the ashes of Big Shoes. In Cape Town, Paedspal. In Durban, Umduduzi. In Johannesburg, Thusanani and Wits Palliative Care at Baragwanath Hospital continues the essential work today.

 

 

Face to face with Michelle Meiring

Sometimes death is not just inevitable, but imminent. For a pragmatic like Dr Michelle Meiring the challenge lies in creating a soft landing, to cushion life’s twilight hour in love and care. Her focus is children; her mandate starts when other doctors say: ‘there’s nothing more to be done’.

Paedpal’s Dr Michelle Meiring Photo: Joyrene Kramer

It all started at Baragwanath Hospital in Soweto in 1999; the year that saw Thabo Mbeki’s presidential inauguration and the onslaught of Aids-denialism. ‘I was training at Baragwanath Hospital,’ says Michelle. ‘I think a lot of us went into paediatrics thinking kids are resilient, they don’t die, they bounce back – it’s a fun field. And then to be swamped with all of that dying, it was just not what a lot of us expected.’

She recalls how up to fifty sick babies arrived at Baragwanath per night. ‘It was the days before we had antiretroviral treatment,’ she says. ‘We were fighting for Nevirapine, there were a lot of doctors picketing, I mean Mark Heywood (former Section27 executive director) was involved and all the rest of it. So we had a lot of paediatric deaths, sometimes up to three deaths on one shift. It was very traumatic to witness so much death and dying and having to fight our own government for proper treatment.

‘I was a bit of a nerd and didn’t like to have death stats on my slate. So I used to try and keep the babies alive until the next shift, handing over to my colleagues, so they got the bad statistics.’ Michelle smiles and shrugs her shoulders. ‘You know, silly little things you do in those situations,’ she says.

During the interview, Michelle laughs a lot. Her face breaks into an easy grin, even while recalling perilous days on the job. This may well be her nature; perhaps it’s also partly a learned response, a means to soften the sadness at the centre of her work.

“During the interview, Michelle laughs a lot. Her face breaks into an easy grin, even while recalling perilous days on the job. Photo: Joyrene Kramer

One particularly gruelling night at Baragwanath remains etched in her mind – this was the night that would shape her future. She was working around the clock to prolong the life of a little girl, four months old.

‘She came in with very, very bad pneumonia,’ recalls Michelle. ‘She should have been ventilated, but we weren’t able to do so. She also had renal failure, with a lot of electrolytes and salts in her blood. I thought of doing things like putting twice the amount of oxygen on, nebulizing her; we also had this thing where we did blood tests every hour to see what’s happening and trying to correct that. Basically, I was poking this poor baby every hour to see if I could get her through the night. And you know, occasionally we did pull babies through. But this baby, she was dying. She died at seven o’clock in the morning, and the handover was at eight. So I was like: “You little bugger, why couldn’t you have waited just one more hour?”’

After the baby died, teetering with exhaustion, Michelle had to tell the child’s mother. ‘And we weren’t really taught much in the line of communication skills at medical school,’ she says. ‘So I basically mirrored what most of my senior consultants did. They usually said to the moms: “Terribly sorry, we did everything we could, but your baby has died.” That morning I was met with one of those very violent grief responses. You know, she fell to the floor and wailed, and there was nothing I could do to calm her down. I was tired, and she was tired.’

“I had one of those out of body kind of moments; just thinking, actually that could’ve gone better.”

Then a bolt of insight struck. ‘I had one of those out of body kind of moments; just thinking, actually that could’ve gone better. I thought to myself, what have you done? All of those holes you made, poking the poor dying baby. Had I realised she was dying, I would not have pricked her every flipping hour. I would have managed her distress because she was really struggling to breathe. And also, if I had just sat down with the mum and said: “You know, it’s not looking good.” Then she would have been better prepared.

‘It hit me. There is this huge gap in our training. We are not taught how to look after people who are not going to survive: how to prevent pain, how to manage distress, how to counsel the family. Basically, it was just this missing skill set.’

After her ‘aha moment’ Michelle discussed the matter with staff at the Houghton Hospice in Johannesburg. ‘To my surprise they told me they weren’t looking after children at the time. They said they didn’t have the paediatric expertise. So I said to them: “Why don’t we make a trade? I’ll teach you paediatrics and you teach me palliative care.”’

In 2003 she opened a five-bed paediatric ward at the Houghton Hospice, and in 2007 a ten-bed ward at a hospice in Soweto. That same year she started hospital consultation services at Baragwanath, then at Coronation Hospital and at Charlotte Maxeke Hospital.

‘I mean, we eventually made it happen. But it was tough in the Thabo Mbeki era,’ she says. ‘Actually quite a lot of my colleagues and friends either went overseas or into private practice. They could not deal with the public sector, it was just too much.’

Over the years, Michelle has driven paediatric palliative care non-government organisations across the country. She co-founded CHOMP (the Children’s Homes Outreach Medical Program) in 2002 and Big Shoes in 2006.

There were ups and downs, which culminated into Paedspal in 2015. Michelle is the founding director of Paedspal, an outpatient children’s facility based near the Red Cross Children’s Hospital in Cape Town. It forms part of PatchSA (Palliative Treatment for Children South Africa), also founded by Michelle.

Her premise is that when children are dying, honest communication is the best medicine. Often parents believe that the truth will be too much for their child to bear. However, children pick up that something is very wrong, says Michelle. She adds that each child’s journey is unique and there’s no ‘one-size-fits-all approach’.

Paedspal room walls covered with children’s drawings. Photo: Joyrene Kramer

The Paedspal rooms are in a tall brick building – the Rondebosch Medical Centre – the interior walls covered in children’s drawings. We are seated at a table in Michelle’s office. Titles on her book shelf include: Death, the Great Mystery of Life by Herbie Brennan, and Walking with God through Pain & Suffering, by Timothy Keller.

Although Michelle is not from a medical family, she knew from an early age that being a doctor was her calling. Born in Paris, France – hence her French name ‘Michelle’ – she grew up in Pretoria. Her father worked for the apartheid government’s Department of Information; her mother was a legal secretary. ‘My father was based in Paris and would scour French newspapers for negative news on apartheid South Africa,’ she recalls. ‘Then he would write to the editors to dispute the facts.’

She describes her upbringing as sheltered, yet she chose to defy convention. ‘Interestingly, I was part of Youth for Christ which had a pen pal club, where we used to write to black children,’ she recalls. ‘And I was writing to these three kids in (Pretoria township) Soshanguve for many years. It was 1983, I was fourteen and interested in knowing what life is like on the other side of the divide. After writing to each other for about two years, we decided we had to meet, and I invited them to our house. My father never knew about this little act of defiance. So they actually took a risk and came into our area. We all sat around and had tea and coffee. My other act of defiance was not to use the enamel cups. No, they got the proper ceramic cups.’

Michelle matriculated at Pretoria High School for Girls in 1988. Then she attended medical school at the University of Pretoria, before doing relief work in post-war Mozambique. ‘There were still uncleared land mines,’ she recalls. ‘That stuff is life changing, I mean it really gives you perspective.’

She met her husband, Owen, during an internship at McCord Hospital in Durban. Together they went to the United Kingdom, working at Exeter Hospital, to pay off student debts. When they returned to Johannesburg, Michelle fell in love with paediatrics, specialising at Wits University.

They moved to Cape Town in 2009. Here Michelle also lectures in paediatric palliative care at the University of Cape Town; while Owen is an anaesthesiologist at Groote Schuur Hospital. The couple have two children, a daughter (16) and son (11).

Michelle says being a mother changed how she works with children. ‘When I went back into the wards after my maternity leave, it was almost like I was tuned into this new frequency,’ she says. ‘You know how dogs have a frequency of noise which they can hear that humans can’t? Something like that. I was able to pick up what the children’s cries meant: a hungry cry. An “I am in pain” cry. An “I am missing my mother” cry.’

Outside of her job, Michelle enjoys being creative. She likes painting and baking. She recently baked her Paedspal colleague Di Burger a birthday cake shaped like a sneaker shoe. ‘I just made Di a shoe cake for her seventieth birthday,’ says Michelle. ‘Di loves shoes and always wears the best sneakers.’ In the Paedspal playroom, Di, a family councillor, nods enthusiastically, scrolling on her phone to show us photographs of the cake. Michelle adds that she loves walking their Africanis dogs, Luigi and Jesse. In addition, she is guided by her faith and prayer.

After twenty years in her field, Michelle’s accomplishments speak for themselves, yet there remains a lot to be done. Like fighting for the Department of Health to implement a national paediatric palliative care policy.

‘I think the really difficult thing when I was training was this feeling of I can’t do anything, because this baby has a non-curable illness,’ says Michelle. ‘And suddenly through palliative care, finding that actually there is something to be done. It’s very satisfying being able to pick up at a point where everybody else said “this is a hopeless situation, there’s nothing we can do”. There’s a lot of satisfaction that comes from being able to help people at what was previously considered an impasse or a dead end.’

People: Face to face with Joan Marston

Joan Marston, founder of the Sunflower Children’s Hospice with one of the children in her care. Photo: Joyrene Kramer

Joan Marston swoops Jose into her arms. ‘Hello beautiful boy,’ she says, kissing the toddler’s forehead as he croons with delight. Jose is two years old and has trisomy 13, a rare condition caused by an extra copy of chromosome 13. He is one of fifteen young patients at the Sunflower Children’s Hospice, based in a house wrapped in trees and shrubs next to Bloemfontein’s National District Hospital. Here children are cared for until they are well enough to return home, or to a foster family; or until they pass away.

When Joan founded the children’s hospice in 1998, it was a first of its kind in South Africa. This was at the height of the HIV/Aids pandemic, with babies orphaned and dying around the country – with years of state-sponsored Aids-denialism still to follow under the Presidency of Thabo Mbeki.

Inside the hospice house, Joan leads us to a small sitting room for the interview. She cuts a tiny silhouette, dressed in a light pink jersey over a floral shirt. But her petite frame belies a powerhouse legacy. At 72, Joan’s career in paediatric palliative care packs a punch in South Africa and abroad. Her pioneering work has touched young lives around the globe, in countries as far afield as Belarus, Russia, the Ukraine, India and Malawi.

Joan understands the pain of losing a child. Her first son died as a baby due to a brain anomaly. After that, Joan and her husband, Richard, had another son and a daughter. ‘Having my own two children who are lovely and healthy may have played a part in my passion to help others less fortunate,’ she says. ‘The other part simply is I’ve always had a specific connection to children. Also, it was really just seeing all those kids suddenly referred to me, and they were dying.’

Joan remembers the moment that prompted her to start the hospice for children. She was cradling Refilwe in her arms, a baby who would die the next day. ‘I will never forget that moment,’ she says. ‘I can remember her eyes, looking up at the trees and the leaves. We had so many Aids babies at the time. Back then, what did we know about paediatric palliative care? We were learning from the children really. They guided us in what we know today.’

Paediatric palliative pioneer Joan Marston founded the special hospice for children. Photo: Joyrene Kramer

Joan grew up in Durban, where she completed a nursing degree at the University of KwaZulu-Natal. Years later, Dr Zweli Mkhize, the province’s health MEC from 1994 to 2004, would leave a favourable impression on her. Dr Mkhize is South Africa’s newly appointed health minister. ‘Yes I’m very positive about our new minister,’ she says. ‘As health MEC in KZN he was very supportive of what we were doing and palliative care for children.’

Joan started working with the Hospice Palliative Care Association (HPCA) of South Africa in 2002, setting up children’s care centres around the country. She insists that children’s palliative care requires specialised staff — with specialised pain relief, opioid management, communication and play skills — and cannot simply piggyback off services for adults.

International impact

In 2005 she was the co-founder and first chair of the International Children’s Palliative Care Network (ICPCN) at a conference in Seoul, South Korea. In

2011, she became chief executive of the network, which was headquartered with her in Bloemfontein. ‘So when I was chief executive of the ICPCN, I was traveling between two and three weeks a month,’ she recalls. ‘I ran big projects in India and Malawi. There was — no there is — this fantastic program in Blantyre, in Malawi, and then one in Mumbai; I was overseeing the development in both countries. I’ve also helped in Georgia. They wanted to start paediatric palliative care in Tbilisi, and asked me to do some training for them and I’ve been back a few times to help since. They’ve developed a lovely children’s hospice up there.’

Paediatric palliative care often is an unmet need in low-income countries. ‘Children can’t advocate for themselves, you know,’ says Joan. ‘And people don’t like thinking about children dying so if nobody is reminding them it gets pushed down the agenda’.

Joan stepped down as the ICPCN’s chief executive in 2016, leaving behind a worldwide system of programmes, care units and research, underpinned by her mantra: ‘Don’t forget the children.’ Today the ICPCN has 120 member countries.

At 72, Joan’s career in paediatric palliative care packs a punch in South Africa and abroad. Photo: Joyrene Kramer

Fallout from Chernobyl

Despite her retirement, she is not slowing down. In September, she will address a conference in the Ukrainian capital of Kiev, focusing on palliative care for children in the aftermath of the 1986 Chernobyl disaster.

‘So in South Africa our tragedy has been HIV,’ says Joan. ‘Similarly, in Russia, Belarus and in the Ukraine they’ve been dealing with cancers because of the fallout from Chernobyl. So five years ago this foundation in Kiev contacted me and asked if I would speak to their government about palliative care for children, and I’ve been going since.’

Like South Africa, the Ukraine has budgetary constraints. ‘It’s a very poor country and it has this ongoing war with Russia on its borders, you know. If you look at the history of the Ukraine, apart from corruption they really have had tragedy after tragedy. They are lovely people, though. I love my Ukrainian friends, they are accomplishing great things with such limited resources.’

Joan’s sense of humour shines through when she brings up the Ukraine’s newly elected president, comedian Volodymyr Zelensky. ‘They have a new president now, so hopefully he will be good for the country. He’s a comedian, so yes, it’s going to be interesting going back,’ she says, laughing.

Joan will be joined in Kiev by Anna Garchakova, founder of the Belarusian Children’s Hospice. The two have collaborated over the years, and in a warm tone, Joan describes Anna as a friend. ‘Anna really is a wonderful lady,’ she says. ‘So the Belarusian government flew Anna to Washington to learn the latest about palliative care for children, so she could apply that given their problems after Chernobyl. And she runs what I think is one of the best children’s hospices in the world — and I’ve travelled a lot. One thing we have learned is that principles of palliative care for children are the same the world over. It doesn’t matter whether you’re in the United States, Belarus or in South Africa.’

A big dorp

Joan and Richard moved to Bloemfontein forty years ago, and are happy in the Free State city. ‘We moved here for Richard’s work,’ says Joan. ‘It’s what you call a “big dorp” you know, you get to know the people. So it’s where we have our friends, and as you get older that’s really important. Bloemfontein is a good base.’

The Sunflower Hospice has become somewhat of a family endeavour. ‘Richard is very supportive, he’s just amazing. I mean he collects the donated food from Woolworths for the hospice. He is an accountant and does the finances of the hospice too,’ she says.

‘Like on Saturday, I had to see a patient way out of town, thirty kilometres out, and I wasn’t sure where to go and he came with me, you know, he’s very good. I couldn’t do this without that support.’

Palliative care is a right

In essence, Joan believes every child has the right to have palliative care. And that budgetary constraints are not an excuse for governments not to provide these services. ‘Children should not suffer,’ she says. ‘I mean here in South Africa, we’ve got all the basic medicines, we’ve got the educational courses, we’ve got the knowledge.’

She adds that she remembers every child that she has ever cared for — and that each ‘leaves a footprint in her heart.’ A big heart indeed, with many, many little footprints. ‘You don’t forget them, you really don’t,’ she says.

A children’s hospice rising like an oasis

Sunflower Children’s Hospice. Photo: Joyrene Kramer

In July Bloemfontein is dry and hued in shades of brown. Against this backdrop, the Sunflower Children’s Hospice rises like an oasis: the house is covered in bright murals and surrounded by trees and budding shrubs. Inside, food smells pour from the kitchen. There are stuffed toys perched on stools: Barney the dinosaur, a giraffe, and a teddy bear.

In 1998, as the Aids epidemic was sweeping through South Africa paediatric palliative pioneer Joan Marston founded the special hospice for children. At the time, it was a first of its kind in the country. Most of the home’s early patients were babies dying of Aids. Situated next to Bloemfontein’s National District Hospital, its patients have access to top medical and surgical care.

Joan Marston, founder of the Sunflower Children’s Hospice with one of the children in her care. Photo Joyrene Kramer

Today, the house is home to fifteen young patients with life-threatening diseases. They sleep in fourteen donated cots in three bedrooms; the eldest, nine-year-old Fransina, has a bed. At any time two carers are on duty to look after them. Even at night, two members of staff stay awake.

Fransina has spina bifida and kidney problems. In the house’s lounge, she is bent over a small table, meticulously shading a picture with coloured pencils. Next to her is two-and-a-half-year-old Thandeka, recently recovered from kidney removal surgery. Thandeka smiles, chirping greetings and waving at us.

‘Thandeka is now absolutely fine,’ says the hospice’s manager, Melinda Muller. ‘But when we got her from Trompsburg she was very sick. We got her and Fransina together — Fransina is from Petrusburg — about a month ago.’

Melinda is sitting behind a large desk, paging through a ledger book where notes on each child is kept. Some of the children were abandoned by their parents. Some require ARVs or were simply too ill to stay at home. Some were abused — horrific details that cannot be divulged as court cases are underway.

Some of the children, like two-year-old Amo, who is blind with cerebral palsy, will probably never leave the house, as she is too sick. Amo is fed through a tube.

The rest hopefully in time will get well enough to return home, or to be released into foster care. Just last year, the hospice released seven children.

‘For example, Thandeka won’t go back to her parents,’ says Melinda. ‘But we will see if there is an appropriate relative, otherwise a foster parent to take her in. If so, we will let her new mommy come over here so they can first get used to each other, to see if it works.’

During the interview, there is a small knock on Melinda’s office door. It opens, and Fransina peeks in. ‘What is it Fransina?’ asks Melinda. Fransina enters, pulling a face. ‘Sister, the salt in the food is burning my tummy. I don’t like my lunch,’ she says. Melinda gazes at the young girl patiently. ‘Now what, dear child?’ she asks.

We see miracles

A professional nurse, Melinda has managed the hospice for ten years now. Before that, she worked at the Bloemfontein Mediclinic’s children’s ward.

‘We see miracles,’ she says. ‘Doctors who say there’s nothing more they can do, but then the children get better here. Like this boy, he was in a coma for a year. He had TB meningitis. Then one day he woke up. He went back home, too.’

She says the last time a child died in the house was two years ago. It was a baby with hydrocephalus, a build-up of fluid in the brain. On the house’s outside wall, the deceased girl is remembered: ‘Bokamoso Kotoyi 12/07/2017 seven months,’ reads a small plaque. Around it, many more plaques recall young lives.

‘Sickness and death; we explain this to the children in their own terms,’ says Melinda. ‘We tell them that their friend has gone to Jesus.’

Despite all the bright toys and care, do the children miss their own homes? ‘Yes,’ says Melinda. ‘Most miss home, they do ask for their mothers.’

The hospice’s true scope lies in its outpatient project, which reaches 400 youngsters aged from one-month-old to 18 around Bloemfontein: in the townships of Batho, Joe Slovo, Rocklands and Heidedal, and in surrounding rural towns.

Nurse Olga Molahloe is in charge of the outpatient operation. In the Sunflower bakkie, driven by Thomas Selibe, she visits countless households each day, delivering food parcels — with eggs, long-life milk, pasta, soap, tinned food and tea — ARVs and other medication.

‘Sometimes, when the patients are very sick, Thomas becomes an ambulance driver too,’ says Olga. ‘Then he must bring the patient back here to the hospital fast.’

Olga has worked at Sunflower for 26 years. ‘The relationships you build with the families are very strong,’ she says. ‘And over the course of time the children make you their confidant, it is a big and loving responsibility.’

Making ends meet

The hospice has struggled with finances in the past. But between Joan’s fundraising drives and generous local donations it makes ends meet.

During Spotlight’s visit, two men with bulging bags arrive at the hospice. They are delivering spinach and pumpkin from a nearby church garden. ‘This will be divided between the hospice kitchen and parcels for the outpatients,’ says Melinda. Woolworths donates food to the hospice too, as does the Môreson egg farm.

 

Inside the bedrooms are curtains with cartoon piggies and butterflies, and soft bedding. These were gifts from the local Cheetahs rugby team, who also raised money to have the house painted and its floors newly laminated. ‘The rugby players and their wives have done so much, we are very grateful to them,’ says Melinda.

Over weekends, Melinda and a friend run a cake and confectionary stand to collect money for the organisation too. ‘I know we’re making a real difference. It feels good,’ says Melinda, smiling shyly. Behind her a big sign reads: ‘Stay focused and never give up.’