Down Syndrome children refused heart surgery

A Genetic Birth Defects Conference hosted by the Department of Health heard yesterday that limited resources at public hospitals meant that children with Down Syndrome were often refused heart surgery.

It is estimated that Down Syndrome occurs in 2 out of every 1,000 live births in South Africa. People with Down Syndrome are especially susceptible to congenital heart defects that require surgery, they also have a shorter life span than the general population and are at risk of Alzheimer’s Disease and other health problems.

Professor Solly Levin, head of paediatric cardiology at Johannesburg Hospital told the conference that there was a steady decrease in the percentage of patients operated on in his unit, from 70% of those who required surgery in 1999 to 60% last year. He said that dwindling resources meant that health care workers were forced to give preference to children with less complicated heart problems than Down Syndrome children have.

The practice is not limited to South Africa. At an inquiry into the issue at the Royal Bromptom Hospital in the UK in March, 32 families gave evidence that children had been steered away from surgery because they had Down Syndrome. The hospital argued that because of the risks involved, the quality of life of the Down Syndrome patients after surgery and their shorter life span, other children were prioritised for surgery. “Is this unlawful or is it unfair?” Prof Levin asked the conference.

Prof Levin said that although the mortality rates in the kind of heart surgery required by Down Syndrome patients was high, it has declined significantly, from 21.7% in 1989 to 7.2% in 1997. Even so, in circumstances where there are scarce resources, patients with Down Syndrome are still experiencing discrimination because of financial constraints.

He said it was important to ensure that value judgements do not determine treatment, while Down Syndrome people were affected by disability, infertility and other problems most have happy lives. He said that doctors should act in the best interests of the child and not of their parents or society: “The challenge is to find a balance between the power put in our hands as doctors and our fundamental moral and religious beliefs.”

Dr Rik de Decker from the paediatric cardiology unit at the Red Cross Children’s Hospital in Cape Town said that although the hospital had the same resource problems as other hospitals, all children received treatment including those with Down Syndrome. “We found that if we don’t operate then their disability and the burden they carry later in life is much higher,” he said.

Although some hospitals have developed protocols to decide who receives treatment in the case of severe head injuries and kidney disease, there are no national protocols for treating patients with scarce resources.

Participants at the conference called on the Department of Health to draw up national guidelines to help doctors make decisions about who gets priority treatment.

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