Maverick Citizen

MADIBA LEGACY

Medical teams literally bring smiles to the faces of little ones

Medical teams literally bring smiles to the faces of little ones
CT scan machine at NMCH. (Photo: Kathy Berman) Nonhlanhla and her mom at NMCH. (Photo: Kathy Berman) Surgery ward playroom. (Photo: Kathy Berman)

Last week marked the first-ever Smile Week at the Nelson Mandela Children’s Hospital in Johannesburg. It is a week when public, private and professional sectors come together to bring joy and laughter to the faces of 23 South African children through surgical reconstruction procedures.

Although she smiles and giggles readily, it will take a ward full of medical professionals — surgeons, nurses, psychologists, therapists, funders and organisational muscle — over the years to bring a fully re-constructed smile to the face of little Nonhlanhla Zwane. 

At five years old she is a beam of sunshine: vibrant, brave, resilient and hopeful. And about to head for surgery — again. A burn survivor, when she was just nine months old, she was with her gogo at home in Orange Farm, when a fire broke out. Her parents had left their precious baby with her grandparents for the day, to play with her cousin. A fire broke out. Her cousin, unfortunately, did not survive. Her grandparents, who also sustained injuries, have subsequently died. 

But Nonhlanhla continues to smile and bubble. And is lapping up the attention of staff and visitors alike at the Nelson Mandela Children’s Hospital (NMCH). She is about to undergo a surgical procedure in the most professional, child-friendly and welcoming medical facility on the continent. During one week of sustained joy and hard work, medical professionals once more volunteer, and assist in bringing smiles to the faces of disadvantaged children, through corrective plastic and reconstructive surgery.  

One of six wards of burn and cleft lip and palate child patients being operated on at the NMCH this Smile week — under the auspices of the Smile Foundation — this is just one in 1,200 surgical interventions conducted every year, leveraging over R24-million of donor funds. Established 23 years ago by philanthropist Marc Lubner of the Lubner Family Foundation, as a wish from Madiba himself, Smile is a happy and life-saving convergence of private- and public-sector partnerships that work — magnificently. And not only in the efficient and whimsical environs of the beautiful NMCH. Over almost a quarter of a century, the Smile Foundation has created beautiful smiles, and uplifted spirits and hope for 5,066 children, and their families, in 17 public hospitals across South Africa. And in each of these, medical professionals scrub up and volunteer their services to lead, work with, share skills and train their peers on these average two-hour-long procedures.

Nelson Mandela Children’s Hospital, Smile Week

Fishing for X-rays at the Nelson Mandela Children’s Hospital. (Photo: Kathy Berman)

CEO of the Smile Foundation, Kim Robertson Smith, who has been a member of the Smile extended family of caregivers since its inception, notes that this first-ever NMCH Smile week is “a culmination of a dream because of our shared history with Nelson Mandela”. Twenty-three procedures will be completed, during the course of the week, led each day by different specialists drawn from hospitals across South Africa. 

But it is not in the impressive statistics that the story is conveyed. Nor is it through the heroic team of medical specialists, fundraising and organisational whizzes that the story reaches its climax. It is in each life that has been touched, and in each family and community where hope and “normalcy” has been restored. An infinite denouement, filled with light and shade, and usually ending as “much happier hereafter” — to put a twist to the fairy-tale ending.

That is because the family can never emerge unscathed. Anxiety is a constant in every parent’s life. Trauma is written into the family’s social DNA. Be it a parent of a cleft lip and palate child or a burn survivor, where the guilt is carried by parents — even when spontaneous electric faults cannot be blamed on them —  the family lives not only with the pain of the injury and the trauma of the incident but also the stigma.

Trust through tenderness

While the medical fraternity crowd around little Nonhlanhla, telling her how beautiful and brave she is, she still lives with the daily responses of those around her. Today the team will work on expanding the healthy skin above her skull on the right side of her face. This involves inserting a tissue expander into the unburnt part of her scalp and gradually introducing fluid through a port, over the course of the next 10 weeks. Once the skin has grown, in about a year, the new skin will be used to create a new ear for little Nonhlanhla. And this is just one more step in her lifelong journey towards reintegration into her society. Soon to follow will be a 3D-printed prosthetic right hand.

While her mom Smangele Cynthia Zwane sits patiently answering media queries about young Nonhlanhla in the bright, cartoon-filled surgical wards, seated across from her is anxious mother, Fredda Sithole, who is waiting for her treasured Thabo to emerge from surgery. The exclamation of relief, as a Smile staff member in scrubs arrives to assure her that young Thabo has emerged strong from surgery with his second (inner) palate procedure successfully completed, and to invite her down to the recovery ward, temporarily lifts today’s — and years — of stress. 

Every three minutes, somewhere in the world a child is born with a cleft lip and palate. And as his mom confides, the daily life of a child like Thabo is not easy. He requires deep emotional reserves as he endures rejection from both his peers and even educational institutions. Although eligible for Grade 1, Thabo has had to remain in Grade R and lose out on his first year of “big school”, as he became the subject of derision at the local junior school. 

As Fredda rushes downstairs into the recovery ward to join Thabo post-surgery, Nonhlanhla is being wheeled into theatre for one more of many procedures that she will endure as her little body is painstakingly reconstructed over the next many years.

Dr Brian Smith, Smile Week

One of the Smile team members tells a mother that it is home time after a successful operation for this young patient. Parents are able to spend all the time they want in the wards with their children. The children are free to wander around and even play in the play area. (Photo: Kathy Berman)

Bringing light and laughter to the resilient and grateful parents and their even more resilient charges is an integrated team of support caregivers, including psychologists, community workers, occupational therapists and lay counsellors.  

A vital link in the clinical chain is the role of Smile Foundation partners,  peer-support organisations — child, family and parent groups —  UMatter, which is dedicated to burn survivors, and Cleft Friends. Both organisations are staffed by a dedicated team of lay counsellors who themselves are the parents of burn and cleft child survivors. Groups gather regularly across the country in key medical facilities. The local Soweto UMatter group, which treats many burn patients, including Nonhlanhla, runs every Thursday at Baragwanath Hospital’s famed Burn Unit. Thanks to private sector support, the unit provides some of the most sophisticated care and facilities to burn patients in Africa’s biggest public hospital. 

As the professional team emphasise, the work of the allied foundations does not start or end with a surgical procedure or even psycho-social support, but includes training in schools and informal settlements about combatting fires and smoke inhalation. The irony is that two of the burn stories shared this week belie the dreadful South African reality where burn injuries are usually a result of shack fires, or boiling pots pulled off stoves by inquisitive toddlers. In both these cases, fires started up as a terrifying consequence of surges in electricity supply to formal houses —  a hazard that predated our current rolling blackout nightmares, and no doubt tragically about to burgeon with the unmanageable surges the country is enduring hour-by-hour.

MRI machine at the Nelson Mandela Children’s Hospital

The MRI machine at the Nelson Mandela Children’s Hospital. (Photo: Kathy Berman)

Power of resilience 

The happy collaboration between NMCH and the Smile Foundation is not coincidental. At the launch of Smile Week 2023, Smile Chair Marc Lubner, ever the optimist, profoundly noted, in defiance of our pervasive negative national stereotypes: “South Africa is not on a downward spiral. It is a land filled with resilient people who are drawn together by the remarkable spirit of Ubuntu”, endowed by the Madiba magic. And it is this legacy that drives the life-changing work of NGOs such as the Smile Foundation and this most uplifting medical facility.

Now five years old, the NMCH, a commitment by Madiba to the children of Africa, funded and built under the aegis of the Nelson Mandela Children’s Fund, is a bustling home for chronically ill children from across the continent.

Led by dynamic CEO Dr Nonkululeko Boikhutso, and Clinical Director Dr Pinky Chirwa, and staffed by teams of dedicated paediatric specialists, NMCH provides a vibrant welcoming, and play-filled venue for the bitter-sweet experiential journey through life-saving medicine that each patient family traverses.

The hospital building itself is an inspirational and fantastical sanctuary of colour, joy, exuberance, and sensory architecture; a haven for world-class health care, where every step of the “customer-experience” has been plotted with innovation and sensitivity to cater to the needs of both parent and child. A massive double-volume reception area looks out over a tranquil garden, one of many outdoor play and pause areas throughout the building, including flowing water features, shaded areas and play spaces. Bright colour-coded wards are joined by glass-encased corridors abutting playgrounds filled with character-filled jungle gyms. 

Dr Nonkululeko Boikhutso, Smile Week

Dr Nonkululeko Boikhutso, CEO of the Nelson Mandela Children’s Hospital. (Photo: Kathy Berman)

Child-sized waiting room furniture is moulded into bright abstract animal shapes. Every wall bears a set of signature cartoon characters — African doctors and nurse stick figures, with broad smiles. Murals include illustrated stories by such South African legends as Dr Gcina Nhlope. The radiology department is a veritable storybook playground where the MRI machine has been constructed into a treehouse (usually a machine that terrifies children and adults alike, this is one that children never want to leave) and one x-ray room a river-side haven. Another, a forest. Even the iconic Soweto Towers along with giraffes feature in an ultrasound room. Like the Johnson & Johnson facilities at the burn unit in Baragwanath, the GE Healthcare imaging centre showcases the best of global (US) medical technology. Both are testimonies to the complex role that the private sector plays in providing global facilities to the most marginalised in our communities.

Changing lives

In the surgery ward today, expectant Smile patients are playing happily in the character-filled playroom, under the eye of psychologist, Wayde Davy – formerly deputy director of the Apartheid Museum — while Smile CEO Kim Robertson Smith and her team work seamlessly with the NMCH staff to keep both young patients and their parents calm and optimistic, as they process the patient roll for the day. Stress does not feature. Only reassurance and joy.

Contrary to utterly misguided perceptions that the NMCH is just a beautiful under-worked structure, the specialist referral hospital continues to diligently serve chronic and acute patients, from across the region, some of whom, like the nephrology patients, spend nearly every week-day attached to a dialysis unit, surrounded by a family of psychologists, dietitians and doctors. NMCH also specialises in cardiothoracic surgery, neurosurgery and ear nose and throat surgery. Reconstructive surgery is a new discipline for NMCH, and so the staff have been flown in from across the country for Smile Week.

Nelson Mandela Children’s Hospital, Smile Week

The tranquil garden at the Nelson Mandela Children’s Hospital. (Photo: Kathy Berman)

As NMCH’s Clinical Director, Dr Chirwa notes: “We have always thought that this kind of procedure should be done in a place that is comfortable for children. NMCH does not have a team of plastic surgeons. Now that this has proven successful, we are grateful that this can relieve the backlogs in other hospitals”. She adds, reflectively, “It is something you never think about. But when you see a mother’s response as she looks at a new child, your heart lifts.”

From transport, logistics and nursing care, to support groups for families of burn survivors (UMatter) and children with cleft lips and palates (Cleft Friends) – starting with specially constructed feeding bottles from birth – and school and citizen-training on fire prevention, this extraordinary relationship between clinicians and patients, institutions and families, extends way beyond the clinical experience, the state-of-the-art facilities, and the expertise of the medical team. Patient care is life-long. Bonds remain for decades. And lives are changed forever. The Smiles are indeed perfectly contagious. DM/MC

Kathy Berman is a social and cultural activist, strategy consultant to private and public sector, and former full-time journalist and broadcaster. She is contemplating entering politics in 2024. Last year, as gallerist/agent, she worked with photographer Elisa Lannacone on producing a series of heroic fantastical photographic portraits of five chronically ill patients from NMCH. Kathy has no formal relationship with either Smile or NMCH but says she is committed to celebrating the good work of South Africans who are making a positive difference in our society. Kathy was working with GE Africa Innovation Centre when the NMCH project was completed. 

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