Providing transformative surgeries to children whom the system has failed

With woefully inadequate services for South African children born with cleft lips and palates, they and their family’s rights to dignity, health and freedom from discrimination are being denied daily.

The irony, according to human rights lawyer and the latest in a small but growing army of Operation Smile SA volunteers, Shanta Reddy of Durban, is that even if a Constitution-based court application succeeds, the state’s capacity to carry out any judicial order will make it a quixotic endeavour. Most children born with cleft lips and/or palates are neuro-typical and have the same range of intelligence as their more able-bodied peers, but their appearance, especially those with cleft lips, condemns them to a lifetime of stigma and alienation. 

Reddy says: “The consequences for day-to-day lifestyle of cleft lip and/or palate mean that from birth children cannot suckle properly or eat solid food, leading to malnutrition, weight loss and failure to thrive. The development of brain and body is also inadequate. It affects their ability to speak, communicate and express themselves. If they cannot speak properly, it affects their ability to write. Then you have the actual physical deformity. They know that they don’t look like their peers – that they’re different. So, it all adds up to a lack of confidence and an inability to express themselves or make friends, which can lead to ostracisation, bullying and stigmatisation.”

Burden of despair

And that’s just the child. She says the parents bear the burden of despair; a lack of access to medical health, often no access to transport and most often no awareness that they have this Constitutionally guaranteed right to health, nor that there are corrective remedies available. (such as Operation Smile’s annual two-day surgical marathon where more than 40 children with cleft lips/palates undergo transformative surgery, each procedure taking on average 45 minutes).

“Because of all this, for them it’s all about ‘how do we cope?’ The child will never find a job, have a family they can support, be a professional or get a basic qualification or learn a skill. So, the child becomes a lifelong burden to the parents,” says Reddy.

Another volunteer, retired Nelspruit psychologist and former Department of Education employee Elize Kruger, cites the “minor example” of a shy teenage boy with protruding teeth who never smiled and was reluctant to talk. She took him to a dentist, who fitted braces.

“Suddenly he could speak and smile because he had nothing to hide. This wasn’t remotely as huge a problem as cleft lip or palate. Do you know the first thing mothers say when they come out of surgery? It’s how beautiful they look,” she says wryly.

Conversely, a scrub sister told me that some disbelieving parents disown their child after surgery, so radical is the transformation.

“They say, ‘that’s not my child – they’ve been swapped! and get into quite a state – until we’re able to calm them down. Then a slow delight starts to creep across their faces,” she grins.

Reddy emphasises that with South Africa having just 10 maxillofacial surgeons and 20 plastic surgeons doing cleft palate surgery, and 10 appropriately tailored multidisciplinary treatment clinics, even if the family does manage to access the public health system, the paucity of services is unlikely to lessen their burden.

Slim chance of success

Her point is best illustrated by a family, living in Van der Bijl Park, whose two-year-old daughter had a cleft lip and palate (she was among the Operation Smile beneficiaries). Their local state tertiary hospital told them they ‘don’t do such surgery’, and advised them to go to Chris Hani Baragwanath Hospital in Soweto. The combination of a slim chance of success and the location persuaded the couple to turn to a private plastic surgeon in Pretoria. He earnestly told them the operation was life threatening, would require four days in an ICU and, together with the private hospital bill, would cost R198,000. 

All of this purportedly essential remedial action was refuted by the four Operation Smile surgeons I spoke to. The child was awake and smiling, hugging her delighted, tearful parents within two hours of her operation. Her parents, like thousands countrywide, had been about to give up when a friend told them about the Operation Smile surgical “marathon”. 

The “system”, both public and private, failed them.

So, what’s the best way to proceed, from a human rights perspective, I ask, seated next to Reddy at a gala hotel dinner at the conclusion of the surgical skills transfer and operations marathon in late July this year. 

She responds: “The way to weaponise it is to create awareness. Remember the family bears the discrimination that the child suffers. So, this lack of awareness needs to be eradicated. Once the parents know that this doesn’t have to be a normative suffering and discover what’s available, they can take those steps. The forty ops this weekend is a perfect example of giving hope and a new future to the child and their family – to become a fully functional person in society.”

Asked whether the legal route could ever bear any fruit, she shrugs stoically: “If we had the money for litigation, we could hold the Department of Health accountable. Simple operations can be performed. It takes 45 minutes for a lip, and two hours for a palate. In an efficiently run space this can be achieved.”

‘Dealers in hope’

Speaking at the same dinner, the CEO of Nelson Mandela Children’s Hospital, Dr Nkuli Boikhutso, described her staff and the multi-disciplinary Operation Smile SA team as “dealers in hope”. 

“In Gauteng we have 24,000 people awaiting surgery, and a lot of those are children. So, a weekend like this makes a big difference, especially when one of our core values is Ubuntu.”

Seated at the same table as us is a Nelspruit dentist and Operation Smile volunteer, who like Reddy got involved when he read about and “connected with the values of the organisation”. 

He didn’t want to be identified as he works at a public hospital. Like many of his colleagues, he singles out the major barrier to transformative surgery as a lack of available theatre time. 

“People are fighting for it – and there are only just so many specialists. Our maxilla facial surgeon has one theatre day per week – trauma and cancer are always pushing elective procedures off the list – it’s not just our hospital, it’s everywhere.”

He asks whether the government should not be using community service officers to treat cleft lips and palates (at least identifying cases and doing the work-up), adding that identifying young doctors intending to become surgeons would be ideal.

“We need to teach more people to deal with it, so that eventually we can offer a fully comprehensive package, like we did this weekend with social workers, speech therapists, psychologists, dentists and so on,” he says.

Skills transfer

Operation Smile’s South African Chairperson, Jason Sive, a former health financing company director who volunteered his business expertise 12 years ago, says: “Skills transfer is a massive driver for us – I really want to pick up our surgical capacity because the backlog is getting bigger, not less. For quite a while we thought there wasn’t a real need – that the cleft care centres were doing it, but we were so wrong. We just hadn’t spent enough time researching it.”

In South Africa, the estimated incidence of cleft lip and/or palate is 0.2 to 0.3 per 1,000 of the population , but surgeons speak of weekly seeing adult patients for whom treatment at an earlier stage would have avoided a world of pain and stigma. Surgical repair is best done at three to four months of age, enabling better postoperative physical development and adaptation. DM

Chris Bateman is a veteran journalist, freelance healthcare writer and former News Editor of the SA Medical Journal's Izindaba section. See www.thrive2write.co.za