For theirs is the kingdom

2017-09-03 06:00
A little patient admitted to Lambano, the only palliative care unit for children in Gauteng, based in Malvern. Picture: Leon Sadiki

A little patient admitted to Lambano, the only palliative care unit for children in Gauteng, based in Malvern. Picture: Leon Sadiki

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The Lambano Sanctuary’s words of welcome are spelt out on white stones on the patch of grass in front of the facility. The only sign that the facebrick structure in Malvern, Johannesburg, is a care facility comes in the form of the oxygen canisters in a metal cage at the side of the building.

A uniformed young woman brings two children outside to catch some weak rays from the winter sun. On the front stoep is the empty frame of a child’s bed painted in Ferrari colours. A dilapidated Wendy house, its colours long faded, stands in one corner of the garden.

From inside, one can hear the thin, plaintive wail of a child, which mounts in intensity every few seconds. It is the sound most mothers never want to hear; a sound even doctors dread. It is the sound of a child in agony.

Mosetsana* (9), a little girl in a pink tracksuit, grips the sides of a walking frame, supported by two nurses.

“Mama, mama,” she wails, pleading for the arms of an absent parent, her face a mask of pain. The nurses urge her on as she takes one agonising step after another.

Three other children sit on two threadbare couches in the lounge. Joseph*, an infant with a severe cleft palate, is in a feeding chair. Evan* (13), a brooding teenager with piercing eyes, is horsing around with Reabogile* (5), a chubby child who has just lost all his baby teeth and fixes all visitors with a gummy grin.

Gabriel* (6) is transfixed as he watches SpongeBob SquarePants fight yet another duel in Pineapple Cove. The child’s wizened face with its hollowed-out features makes him look far older than he is. But, as his medical chart shows, he is in a far better condition than he was when he first arrived. He watches the popular children’s comedy show without smiling or laughing, silent as a shadow.

The nurses shout for the children to clap as Mosetsana finishes 10 steps with her walker, tears streaming down her face.

The Lambano Sanctuary is a haven for children with life-limiting and life-threatening illnesses. Some of the patients here do recover and go home, but others arrive when nothing more can be done for them medically. They come here to die.

At the nurse’s station on the ground floor, Dr Mehnaaz Ally (37) points to the large feeding chart on the wall. There was a mix-up with one of the patients, and she explains to a staff member the need to thicken the child’s food. With such small patients, a minor mistake can have major consequences.

Dr Mehnaaz Ally

With a shock of blue and pink hair, pink scrubs, and perfectly made up face and manicure, Ally defies the typical doctor stereotype. As she begins her rounds, she jokes with nurses with an infectious energy, and her young patients rush up and grab at her knees.

Minutes earlier, she walked in with two gigantic pots brimming with chicken curry from the boot of her car for the staff’s lunch. The week before, she brought trays of cupcakes, lovingly made, she jokingly reminds the children, with her own hands as she toiled late into the night.

A Wits Medical School graduate, Ally is Lambano’s resident doctor, practising a field of medicine she says many of her peers either discard in favour of more lucrative and prestigious specialisations, or are reluctant to work in because they don’t regard it as “real medicine”.

The International Children’s Palliative Care Network defines it as “a response to the suffering and unique needs of each child with a life-limiting or life-threatening condition: a holistic, professional and active approach to caring that includes pain and symptom management”.

At Lambano, a team of specialists, including paediatric nurses and social workers, provide care to the children referred to the facility from public and private hospitals, either until they are well enough to return home, or until they die.

Founded by former paramedic Lyn Croote, Lambano is the only facility of its kind in Gauteng.

In the early years of the HIV pandemic, palliative care was not offered to child patients, with many languishing in public hospitals or sent home to poor families ill-equipped to care for them.

The World Health Organisation estimates that 40 million people worldwide require palliative care, including 2.1 million children with diseases including HIV/Aids, congenital abnormalities, cancers and cardiovascular diseases. The organisation estimates that “less than 14% of those needing palliative care at the end of life currently receive it”.

Despite the invaluable service it offers to indigent and marginalised communities in and around Gauteng, Lambano, which receives no funding from the state, is struggling to stay afloat. A plaque bearing the logo of the US HIV/Aids programme and USAid outside the administration building is a reminder of the days the facility received outside funding, now long dried up.

With so many demands on the national health budget, facilities that are run privately battle. Most of Lambano’s patients come from desperately poor families who cannot afford private healthcare for their terminally ill children.

Joyce Mohapi (42), a caregiver at Lambano, is a mother of two young children and says it can be difficult to do her work.

“I always think about how I would cope if it was my child [who was ill],” she says.

Her colleague Zameka Mashiqa (35) agrees. She has been at Lambano for seven years and says that, when she leaves work every day, she has to “switch off” before she gets home to her four children.

“Otherwise, you take the stress from here to there, and vice versa,” she says.

The staff say what makes their work more meaningful is that they are able to provide care that gives their tiny patients a semblance of dignity as they leave the world.

Originally from Switzerland, soft-spoken nurse Sybil Coradi (43) has worked here for seven years, having come to South Africa to perform missionary work. The hardest part for her has been witnessing the high level of inequality in South Africa, which directly affects the level of care provided to poor patients.

“It’s just so in your face,” she says of her patients’ families’ grinding poverty.

Part of her work involves home visits to discharged patients, and collecting sick children and bringing them to the facility when their parents are unable to care for them.

One of the most heartbreaking aspects of her work is having to explain to child patients when a parent does not visit. The families offer various excuses, most of which cannot be explained to the child.

Sometimes the parents have left the children in the hospital and are untraceable. Sometimes they are too poor to afford transport. Sometimes the parents themselves are too sick to care for the child. In some cases, the primary caregiver has found a new partner who does not want to assume the burden of a sick child.

In these instances, Lambano’s team of social workers has to find an alternative home for the child when he or she is discharged. If the child is too ill, all the staff can do is make the child as comfortable as possible and provide pain relief until the time comes.

Lambano’s wards all have comforting names and are painted in soothing pastel colours – Thabo/Joy, Tshepo/Hope and Kagiso/Peace.

In one ward, a nurse feeds a fat-cheeked baby in a colourful babygro. The nurse gently holds a heavily bandaged growth protruding from the baby’s head. When he was born, his brain was growing on the outside of his skull. He will not survive. In such cases, a diagnosis is usually made in the hospital to not feed the child, but this was not done. One of the nurses explains that many pregnant women in public hospitals are foreign and may not have received proper antenatal care in their home countries, during which such abnormalities could have been detected early.

The nurses now provide what they call supportive feeding for him, and he remains heavily sedated.

In Tshepo ward, two cots line the wall. In one bed, a little boy cries weakly. He has no prospects for survival, and the child’s father has signed a “do not resuscitate” form, which means there will be no medical interventions when he reaches the final stage of his life.

In the opposite bed, an infant girl with thick black hair sucks on a bottle. Her severely swollen stomach signals incurable liver failure. Her parents, hoping against hope, took her for a liver transplant, but it failed. Ally explains that the girl is growing and has moved from formula to a soft diet. They know she will not last much longer, and are just keeping her comfortable and medicated to manage her pain.

The girl’s parents used to visit when she was first admitted, but now they stay away. They are desperately poor and live in an informal settlement near Klipspruit. Even if they wanted to visit regularly, they would probably be unable to.

“The bottle is the only comfort she has,” Ally says.

Ally was first exposed to paediatric palliative care as a young registrar at Chris Hani Baragwanath Hospital in Soweto, where she became increasingly concerned about the medical staff’s lack of awareness about how to treat children with life-threatening or life-limiting conditions. She felt that the assumption was that children did not know the difference in the way they were treated.

With public health facilities under strain, she acknowledges that providing individualised care is difficult. But given that many of these children were literally born to die, providing them with quality of life in their short time on earth is important.

“It was small things, like putting a pain patch on the child, or putting a shirt on a baby, or letting a child feed themselves ... it gives them dignity.”

And the dying child “isn’t the cancer in bed six, it’s Thabsile”.

Despite the mask of professionalism she wears, Ally admits her work can be emotionally draining. She cannot but be affected by what she has to do, especially when it involves making decisions on whether or not to continue treating a child with no chance of survival.

The recent Charlie Gard case in the UK put into focus a major issue around paediatric care for terminally ill children that doctors such as Ally also grapple with – whether continuing treatment is in the child’s best interests. She says that parents are often so desperate to prolong their child’s life, they lose sight of their physical suffering. Offering parents a plan for palliating their child is often misconstrued by grief-stricken parents as doctors wanting to “kill off” their child.

Parents struggle with complex emotions, including guilt. In some cases, they are advised by religious or cultural counsellors to “fight to the end”.

“We have to tell them that prolonging the life of the child isn’t in the child’s best interests, or their best interests, or in the interests of the siblings. What we try to make them understand is that our best hope is to make him or her comfortable until their time comes,” says Ally.

She cites a case of a five-year-old girl with a muscle-wasting disease that progressed, despite all medical interventions. Her distraught parents implored doctors to continue treatment, but the girl refused a morphine drip, telling Ally: “I know it’s my time, I have spoken to Jesus.” The parents took their child home to die.

This is always the preferred option, says Ally, because “everybody needs some dignity and nobody deserves to die alone”.

Lambano also has patients whose parents are completely drained from constantly caring for them, and the facility offers a two-week respite care admission to enable families to get some rest.

Despite a lack of funding, the quality of care provided at Lambano matches that of private hospitals, so much so that it occasionally receives private patients who have been referred here. Ally explains that they are getting more enquiries from the private sector looking for advice on palliating child patients. But she is galled that the level of care a dying child can receive in South Africa is dependant on the parents’ income.

“If you have medical aid, you can get anything – even a private plane to fly your child to a facility for treatment. If you are in a public facility, the most you can hope for is 48 hours on a ventilator.”

For her, the most important thing is that dying children from poor families are not left to die alone and in pain in a hospital bed, with no support and no medication. The essence of her work is to ensure that the child leaves this world in a way that minimises their agony, and brings comfort and closure to their families.

She is often asked why she is not depressed by her job, and why she didn’t choose another branch of medicine.

“I don’t see it as depressing, but dignified … there is no dignity in suffering,” she says.

* Not their real names

Read more on:    johannesburg  |  youth

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