The nurse carefully places her stethoscope on the left side of the tiny 10-week-old baby’s chest. She frowns. There is no heartbeat.
She then shifts the device to the right side of the infant’s chest. Finally, she hears his little heart pulsating.
But she’s still worried. His heart is on the wrong side.
“You’ll have to see a doctor urgently,” she tells the baby’s mother.
Zothile Nkabinde brought her son to the local pharmacy for a check-up after he had suddenly started to lose weight.
Lack of appetite and weight loss can be a symptom of a heart disorder known as a ventricular septal defect.
Children who suffer from the condition are born with tiny holes in their hearts. These small perforations occur in the wall that separates the heart’s two lower chambers or ventricles, explains the US nonprofit research organisation Mayo Clinic . In some cases, these openings can interfere with the normal functioning of the heart, allowing for oxygen-rich blood to be pumped back into the lungs, instead of the body, causing the heart to work harder.
Although many small holes of this type can close on their own as children grow, some larger cavities may need surgery, according to information on the Mayo Clinic’s website.
Doctors at Sebokeng Hospital, east of Johannesburg, eventually diagnosed Nkabinde’s son with the disorder and referred the boy to Chris Hani Baragwanath Hospital’s cardiology unit for heart surgery in July. Cardiologists at Chris Hani Baragwanath sent mother and child to the Charlotte Maxeke Johannesburg Academic Hospital.
That’s when Nkabinde’s long wait began. She was told the earliest she could expect her baby could be examined by a surgeon at the hospital was three months later, in October, as one of the hospital’s two specialists was on leave.
Nkabinde explains: “Because my son’s heart is so complicated, they wouldn’t give him to the junior surgeons to work on. So we were waiting for [the] professor … to look at him and then decide what kind of surgery he needed to do.”
Where are SA’s paediatric heart surgeons? Not in rural areas.
Gauteng has only three paediatric heart surgeons working in the public health sector and both are based at Charlotte Maxeke, according to the provincial health department’s deputy director general of clinical services, Richard Lebethe, and doctors within the department. Additionally, sessional, or part-time private specialists, are also contracted by the state.
The shortage of paediatric heart surgeons isn’t just a Gauteng problem. Nationally, there are fewer than 10 such specialists serving the public sector, says John Hewitson, who heads up the University of Cape Town’s paediatric cardiothoracic clinical surgery unit . Eight of these heart specialists work in Gauteng, the Free State and Western Cape. More rural provinces such as the Eastern and Northern Cape don’t have any paediatric heart surgeons, he adds.
“A shortage of specialists results in longer waiting lists…The longer you wait, the less likely that the surgery will be successful,” he says.
Hewitson says that serious heart defects, such as what Nkabinde’s son has, should be treated as soon as possible because they can affect a baby’s growth, including brain development.
At Charlotte Maxeke hospital, former Gauteng health spokesperson Prince Hamnca says, children with heart problems wait for about four months to undergo surgery, unless it’s an emergency. When paediatric specialists at the Johannesburg facility cannot accommodate children in need of heart surgery, they are often treated at other academic hospitals by the general cardiothoracic surgeons who normally operate on adults, a situation Lebethe confirms.
At George Mukhari Academic Hospital outside Pretoria, for instance, 17 children are awaiting heart surgeries and will spend anything from three to 11 months waiting for their operations, Hamnca had told Bhekisisa before leaving the department in October.
But Hewitson warns it’s often better for these tiny patients, especially infants and toddlers, to be treated by surgeons who specialise in children. Some heart specialists can treat both adults and children. But Hewitson cautions it’s best for young patients, especially infants and toddlers, to be seen by paediatric heart surgeons who are often better able to develop specialised treatment plans.
Growing talent here at home
Part of the reason that South Africa has so few paediatric heart surgeons is that there are no registered training facilities for this discipline in the country, Hewitson explains. And although South Africa recognises cardiothoracic surgery as a discipline, it doesn’t yet formally acknowledge a paediatric specialisation within that field.
“There is thus no qualification obtainable in South Africa called ‘paediatric cardiothoracic surgeon’,” he explains.
For these reasons, Hewitson says doctors are forced to go abroad for at least two years to train and qualify as paediatric heart surgeons under the watchful eye of senior specialists.
“Most of the respected paediatric cardiothoracic surgeons in the country, or those considered to be competent, have done time overseas in big paediatric units developing their skills,” Hewitson says.
But in Cape Town, the Red Cross War Memorial Children’s Hospital is currently training the country’s first homegrown paediatric cardiothoracic surgeon – a feat Hewitson believes wouldn’t have been possible without donor funding.
He explains: “The main reason that we are ahead of the rest of the country is that we have a very good donor infrastructure. We are dependent on private donations, which have kept us in a really good condition here in this hospital.”
Hewitson says if the hospital can secure more steady streams of funding for the programme, it could expand.
In late August, Bhekisisa posed questions to the Gauteng health department about the long waiting period for Nkabinde’s son’s surgery. Following our queries, the date for his operation was moved to September 1. Sadly, Nkabinde’s son died in early October.
[Updated 6 November 1:04 pm. The Gauteng health department had originally reported that it had only two paediatric heart surgeons. This article was amended after a specialist working in the public sector notified Bhekisisa that the correct number of these surgeons was, in fact, three.]