Eastern Cape: Heart babies in crisis after litany of false promises and bungles by health department

Yasmine Meyer has been waiting for heart surgery for two years. (Photo: Donna van der Watt)

By Estelle Ellis

25 Aug 2020

The lives of 60 children are under serious threat after the Eastern Cape Department of Health failed for almost two years to fix a critical piece of equipment and stacked up lies and administrative bungles in the process. The children’s parents have no other option but to hope and wait as their children get sicker by the day.

Close to 60 children at Port Elizabeth’s Dora Nginza Hospital, some critically ill, have been waiting for a medical procedure for almost two years after the Eastern Cape Department of Health failed to replace a broken-down catheterisation laboratory at the centre for cardiothoracic surgery in the province.

The cath lab, located at Port Elizabeth’s Provincial Hospital, broke in October 2018 and since then a tragic series of lies, obfuscations, political thuggery and administrative bungles has seen a major crisis developing at Dora Nginza Hospital where the Department of Paediatrics is based.

The Eastern Cape Department of Health claims that the cath lab was to be handed over to the hospital at the end of this month – almost 10 months after it was scheduled to open in November 2019. But the department’s communications director, Siyanda Manana, added that they have to provide training to staff. He said the cath lab will only open in November this year.

Most of the children, including babies who are only a few months old, need heart surgery, but without angiograms – images of the heart produced in the cath lab – even the most willing of heart surgeons can do nothing: at this stage, the department does not even have a paediatric cardio-thoracic surgeon and patients have to rely on a surgeon in private practice who does sessions at the hospital.

Three of the children have developed pulmonary hypertension, a life-threatening condition where the arteries to the lungs become hard and narrow. All of them have just had their first birthday without getting access to the medical help they need. A five-month-old has been placed high on the list, with severe complications including congestive heart failure. Some have been diagnosed with severe failure to thrive due to their heart conditions that cannot be addressed.

Ten of the little patients are Down Syndrome babies born with heart conditions and are at a much greater risk of pulmonary hypertension.

Thirty children are in need of diagnostic angiograms, with 18 of them needing surgery for large heart defects. These patients have been flagged as being at the highest risk of developing irreversible pulmonary hypertension. Others need smaller surgeries.

Twenty-two need non-invasive interventions to close small holes in the heart or other procedures. Doctors said this week that since the list was produced several more cases were added and it now stands at more than 60.

Elmarie van der Merwe Brynard’s son, Joshua, needs cath lab intervention within the next two weeks as his condition is placing an increasing strain on his body.

“I watch him turn blue every day,” she said. “He is still our little showman, does his stunts and his karate moves, but he is getting tired so easy. Some days he sleeps a lot.”

Six years ago Joshua was given to her for safe care as she also runs Forever Family Homes, a safe-care facility for children. The six-day-old baby was blue. Later, doctors discovered that he had several serious heart defects.

Van der Merwe Brynard adopted Joshua in 2019.

“God sent me a baby with a physically broken heart. God sent Joshua. Because of his broken heart, he was destined for life in an orphanage, but God chose me. It took a child with a broken heart to heal mine.”

Out of desperation she has now started an online fundraiser to raise enough money to allow Joshua to have his procedure at a private hospital, which will cost more than R180,000.

Another mother, who asked to remain anonymous after she was threatened by nurses for “daring” to complain about the situation, said she is desperate for any help. Her little girl is three years old. Born with Down Syndrome, the child has a serious heart defect.

“She had surgery in 2016 and in 2017. The doctors said there were more problems than they anticipated. She needs surgery to close the hole in her heart,” the mother said.

She said that for the past year she has been taking the child to the hospital but doctors have been unable to help her since August 2018 when the cath lab started giving trouble. The equipment was declared to be irreparable in October 2018.

“We went for a check-up in May 2018. On the 15th of August they gave me another day to come for the follow-up as they needed to do tests. On 30 January 2019 the cath lab was still not ready. In July the cath lab was not ready. In August the cath lab was still broken. In October the cath lab was still not open. Then they said, come back in May 2020.

“I phoned. I was worried about the coronavirus. By now she would just stop breathing. She would wake up calling out and holding her chest. My only solution was to let her sleep on my chest. When I am too tired I give her to her father. When he needs to sleep we give her to her brother.

“I would ask the nurses, why are you doing this to us? They always tell me the same thing: ‘She has Down Syndrome.’ They would say: ‘These children won’t contribute anything.’

“They have no urgency. When I complain they chase me away. I am so tired.”

Adult patients are also struggling to access help. Due to long delays in fixing the cath lab, the hospital’s cardiologist also left.

Yasmine Meyer has been waiting for heart surgery for two years. (Photo: Donna van der Watt)

Yasmine Meyer, 60, from Bloemendal has been booked three or four times for surgery, but without an angiogram surgeons cannot operate on her to close two holes in her heart.

“I don’t know what to do anymore. I am feeling very despondent. I had this problem from childhood. I am very worried. How am I going to survive? I have children, grandchildren and foster children to look after,” she said.

Meyer said she has been struggling for a year to access medication for hypertension and other chronic conditions.

“When I go to the clinic they say I must go get a letter from Livingstone Hospital. When I go to Livingstone they say I must bring a letter from the clinic. Honestly, it is only God who is keeping me alive at the moment,” she said.

Apart from treating adults who suffered heart attacks or need non-invasive surgeries, the state hospital cath lab was home to a programme started by the late dean of South Africa’s newest faculty of health sciences at Nelson Mandela University, Dr Lungile Pepeta, to provide children with congenital heart disease with non-invasive surgery to fix small defects.

In his research work, Pepeta highlighted the need for such a facility as there is a high incidence of congenital heart defects in children in Eastern Cape and also high numbers of children suffering heart damage due to undiagnosed rheumatic fever.

The cath lab was the centre of South Africa’s first paediatric electrophysiology department in the public sector, with Dr Adele Greyling treating children who had heart rhythm disturbances. Patients were sent to her from all over South Africa.

There is a functioning cath lab in Mthatha, but it is understood that because that hospital does not have a cardiothoracic surgeon and a paediatric anaesthetist, the complicated cases from Dora Nginza Hospital are not being referred for treatment.

The department was informed in 2017 that the cath lab equipment had come to the end of its life. The former CEO of Livingstone Hospital and the Port Elizabeth Provincial Hospital, Thulane Madonsela, confirmed at the time that they urgently needed a new one.

In October 2018 the equipment was declared beyond repair. Madonsela was suspended in November after complaints filed against him by organised labour at the hospital. He resigned from the hospital early this year.

The hospital complex has been without a permanent CEO since then.

In January 2019 the former health MEC, now speaker of the Eastern Cape Legislature, Helen Sauls-August, promised that the cath lab would be fixed within three months. She organised the procurement of the equipment through the tertiary services grant.

In March 2019, the cath lab equipment was delivered to the Port Elizabeth Provincial Hospital and was kept outside in a shipping container. At the time, the state agreed to pay for emergency patients to receive treatment at private hospitals.

According to a letter sent to staff at the hospital in June 2019, the cath lab was scheduled to open in July. But the tender for construction was only issued that month.

There was another delay because the price of the accepted tender was 20% higher than the original price and the superintendent-general, Dr Thobile Mbengashe, had to request a deviation from Treasury.

In a letter written at the time, the department’s chief construction project manager, Loyiso Matsiliza, said the delay was because funds for the project had not been released.

After the current MEC for Health, Sindiswa Gomba, was appointed in August 2019 she ignored the crisis in her maiden budget policy speech and instead praised the “ongoing work” of the defunct unit that had been unable to work since October 2018. She claimed Greyling was using a “gamma camera” – a piece of equipment used in oncology. Manana later said it was a typing error.

Shortly after this, the hospital’s only adult cardiologist left the hospital. Plans to move the cath lab to the first floor were abandoned. In August the department insisted that construction was finished, only to find out that it had not started.

In a new plan published by the Eastern Cape Department of Health, a new opening date for the cath lab was set for September 9, 2019. This date was pushed to November.

In a written answer to questions at the time, Gomba’s spokesperson, Judy Ngoloyi, said:

“The completion of the installation and commissioning of the cath lab was initially planned for September 9. However, due to the decision to rationalise the services in the hospital, which resulted in the decision to move the cath lab from the ground floor to the first floor, the revised anticipated completion date is November 15.”

Construction finally went ahead to create a facility on the ground floor but then the opening of the cath lab was delayed to December 2019.

In January this year Manana said they no longer have a date for the reopening of the cath lab. A senior source in Bhisho said he had been under the impression that the cath lab would be operational at the start of the year.

This week he said they are “envisaging” 1 November as a date to reopen the cath lab. He blamed the contractor that was appointed by the department for the delays.

“The contractor has not progressed as per his contractual obligations. As such, we have put him on terms several times in an effort to get them to improve their performance.”

He said they had an undertaking that the construction part of the project would be completed by the end of August.

“Many promises have been made by the contractor in terms of timelines but they could not live up to their promised timelines due to inadequate resources, both financial and human, being allocated to the project.”

He said they had identified a “potential” person to appoint as the new cardiologist.

Asked why the department was not acting against the contractor, Manana replied: “The department cannot comment on what will or will not happen to the contractor. We do not condone low standards and we are very intolerant when it comes to that.” MC

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