At the heart of the matter

Children should not have to die because they are born with congenital heart disease, says paediatric cardiologist at the University of Cape Town and Red Cross War Memorial Children’s Hospital, Associate Professor Rik de Decker.

“The tragedy is that almost all cardiac lesions can be fixed now,” he said. “A lot of what causes the deaths are easily repaired in the cardiac catheterisation laboratory , as well as with operations and live a full and rich life.”

De Decker and the team of paediatric cardiologists from the Red Cross Children’s Hospital in Cape Town spearhead a unique collaboration with two Eastern Cape hospitals, which ensures that critically ill children who are born with structural heart defects, can be treated.

For many decades, specialist physicians and surgeons from Red Cross have been consulting with and treating newborn babies and older children in bi-annual clinics at Frere Hospital in East London and the Cecilia Makiwane Hospital (CMH) in Mdantsane.

It is a carryover from South Africa’s convoluted past – before 1994 when the cities were both part of the Cape Provincial Administration (CPA) under the National Party government.

Ironically, under apartheid, CMH was technically excluded from the CPA because Mdantsane was located in what became the Ciskei under Lennox Sebe in 1981.

CMH was formerly known as Mdantsane Hospital, being renamed in 1977 by the then Ciskei health minister Chief Mqalo in honour of the first black nurse to qualify in South Africa.

Red Cross, now 61 years old, was started as a memorial to those who died in the World War 2. Until Nelson Mandela Children’s Hospital was commissioned, it was the only hospital of its kind in sub-Saharan Africa.

Through the commitment of doctors and administrators and an agreement between the post-1994 provincial governments of the Eastern and Western Cape, the work continues.

Twice a year, a team of paediatric cardiologists travels from Red Cross to do clinical assessments of children. These range from newborns and very young children who have recently been diagnosed and referred by the resident paediatricians at the local hospitals, to older teenagers whose conditions were treated surgically in Cape Town many years ago and who come for annual check-ups.

These essential services and professional connections between the two centres are life-saving.

Over the years, hundreds of children from the eastern part of the Eastern Cape have been successfully treated in this collaboration.

Said Frere Hospital paediatrician Maurice Levy: “There are very few congenital heart defects which are not correctable, but they should be detected early”.

Watching visiting doctors John Lawrenson and George Comitis, and their hosts interact with their young patients, is inspiring.

The children are examined in tandem in adjacent beds in a ward filled with files and electronic equipment. There is close communication between the doctors, the child and the parent during the process. From time to time the doctors will “cross-examine” each other’s patient as a second opinion is sought on a scan image or X-ray.

Junior doctors and interns both contribute during assessments and gain valuable knowledge as well.

At the right time, the Red Cross facilitates transport of the mother and child from the Eastern Cape to Cape Town and also provides accommodation for the mother during the time the child is treated.

The hospital also has a teacher on its team who assists its young patients to keep up with their studies while away from school. Reports are even provided to the school the child usually attends.

Dr de Decker said research in South Africa “totally” under-reports mortality of children from heart disease, because “unless you go to the mortuary and do a post-mortem on every child look to see if it is the heart, you don’t get it”.

“We know that one-in-a-100 of children born will have something wrong with their heart – it’s a fact around the world.

“Of those, 60% must have something done to the heart or they will either die or later on. Half of the 60% are critical; they must be within the first few weeks or they will die.”

He compares attitudes towards heart disease, road deaths and tuberculosis.

“If one-in-a-100 people who drive out there has an accident, there would be carnage on the roads.

“One-in-a-100 is the number of people who have TB in South Africa, and TB is rife in South Africa – everybody knows that. But nobody would say CHD is rife in South Africa, yet it’s the same number. The same number!”

A big reason for under-reporting is misdiagnoses, De Decker said.

“This is a problem of children who are ill who actually have problems with their heart but who present with pneumonia or septicaemia or something else. There are lots of undiagnosed, under-diagnosed children who don’t make it here.”

The Eastern Cape’s government hospital system has one paediatric cardiologist based in Port Elizabeth, and some children are referred there.

However, RCCH still sees the bulk of young local patients with heart disease who require surgical or cath lab interventions.

Dr Adele Greyling is the only paediatric cardiologist in the Eastern Cape’s public health system, heading the unit at Port Elizabeth’s hospital complex which includes the Provincial and Dora Nginza hospitals.

General paediatricians in East London – Maurice Levy at Frere Hospital and Felicity Goosen at Cecilia Makiwane Hospital – work closely with the Red Cross team.

“Both of them can do echocardiography – an ultrasound of the heart – very well. They know what’s going on and they know how to manage their patients,” said De Decker.

“We do 23 procedures in the cath lab without opening the child at all – these procedures would have been done previously through open heart surgery.”