The baby’s heartbeat became slower and slower as the doctors explained to his anxious parents that the heart operation had not been successful and their little boy was going to die.
The parents held hands, the mother rubbing her baby’s head, talking to him softly and sobbing painfully. The father stared at the small naked body wrapped in bandages and loaded with tubes connected to various machines surrounding the bed.
As the doctor talked, the baby boy’s heart finally stopped.
The complicated operation he had just undergone had been too late: months of waiting for proper diagnosis and treatment had damaged his tiny body too much.
He was one of several thousand South African babies who die each year from correctable heart problems.
About 5 000 babies are born each year with serious holes in their heart walls, defective heart valves or other congenital heart defects. About 95% of these defects can be corrected through surgery. But because of a lack of resources and financial constraints only about 20% of these children get the surgery they need—the remaining 80% die.
Lynda Bleazard, chief executive at Walter Sisulu Paediatric Cardiac Centre for Africa, said that because of a lack of resources hospitals and clinics in rural areas might not have the technology to diagnose cardiac defect or might misdiagnose it as pneumonia.
“In Africa we are still dealing with rheumatic heart disease, which is a disease of poverty. That’s when children get tonsillitis and throat infections that go untreated and eventually the heart becomes diseased, which particularly affects the valves in the heart.”
Outside the paediatric ward, 15 minutes before visiting hours, parents were already queuing to get in. A father stood in a corner facing the wall and praying for his daughter’s life.
One of the waiting mothers was Lungile Biyela, whose daughter, Zama Msane, was born at a community clinic in Katlehong six months ago. The nursing sister sent the couple home after confirming that Zama was in good health. Three months later Biyela went back to the clinic because her baby wasn’t recovering from a fever. “I thought she had a cold or something, but the nursing sister who looked at her was concerned about my baby’s breathing. She was breathing deeply, tensing her muscles and letting out a wheezing sound.”
Zama was born with a hole in her heart and an abnormal connection between the pulmonary veins, which bring oxygen-rich blood from the lungs back to the heart.
It costs R100 000 to R300 000 to treat a child for a serious heart condition, which is more than many parents will earn in a lifetime.
“We are unemployed. We just opened a salon on June 9 and 10 days later our lives ended when Zama got admitted to hospital. We have no medical aid, so we had no means of providing the health care our baby needed,” said Zama’s father, Patrick Msane. Zama and her mother spent three months in hospital waiting for the child to get a date for a specialised cardiac test needed to evaluate her surgical needs.
“During the months we spent in hospital waiting for a date I watched my baby get sicker and sicker. She got a different infection every day and was being treated for these infections rather than the heart condition we were there for.”
Dr Greg Martin, cardio-thoracic surgeon, said public hospitals have countless children to treat, but they have limited resources and theatre time, meaning they are forced to treat severe cases first while other cases join the waiting list.
After three months of waiting Zama’s parents felt she was getting worse and approached the Walter Sisulu Paediatric Cardiac Centre for Africa. Zama was admitted immediately, given the treatment she needed for her heart condition and is recovering well at the centre.
The centre is an independent, autonomous charity organisation in Sunninghill Hospital, Johannesburg. It helps children throughout Africa by providing life-saving heart surgery at no cost to their parents.
Bleazard said: “When a child has a cardiac defect, if you put the child on a waiting list it becomes a death list, because they die. Since we started working four years ago I’ve had children on my waiting list. Every month I update that waiting list and every month there’s a child in Africa who has died.”