Kids on long list for life-saving heart surgery

Sick of waiting

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Two little boys aged five and nine are among scores of children in Nelson Mandela Bay whose anxious parents are waiting for a phone call to tell them the new cardiac surgery equipment their youngsters and babies urgently need has finally arrived.
Port Elizabeth’s state Provincial Hospital has been without a functioning catheterisation laboratory – or cathlab – for almost six months.
Despite scores of promises and money being made available, hundreds of patients, some only a few weeks old, are still without life-saving medical assistance.
The Eastern Cape health department – which is unable to give a date when the hospital’s broken cathlab will be replaced – admits that an interim agreement with the private healthcare sector to provide emergency cardiac interventions has still to be finalised and an affordable model negotiated.
This is despite Health MEC Helen Sauls-August confirming in January that money was available through a grant for specialist services to purchase a new cathlab and promising it will be up and running by the end of February.
Over the past five years several specialists warned the department that the cathlab was reaching the end of its shelf life with the equipment frequently breaking down, sometimes in mid-procedure.
The cathlab is used to perform minimally invasive, lifesaving procedures in babies and young children to close congenital heart defects and also to assist adult patients with heart problems.
“There has not been an acceptable response to the breaking down of the cathlab,” Dr Lungile Pepeta, the head of the faculty of health sciences at Nelson Mandela University, said. “It has taken far too long.”
Research done by Pepeta in 2016 showed that three to five babies with congenital heart disease are born in Nelson Mandela Bay every week, with about 120 needing intervention in a cathlab every year.
This week the health department was still unable to provide a date when a cathlab will be up and running again.
Mother Elmarie Brynard, 53, said she remains anxious for the wellbeing of her son Joshua, 5. Joshua was diagnosed with seven serious heart defects when he was a baby.
He needs a life-saving procedure to be done in the cathlab.
“We don’t have medical aid. I am a full-time safety and foster mom and we just cannot afford it,” Brynard said.
“I have been pushing for action and answers.
“We can travel to Red Cross [War Memorial Children’s Hospital in Cape Town] and hope for theatre time.
“It is far from home and we don’t have a support system there, but it can be done.
“However, there are other babies dying because the government cares more about agendas than those lives. And that does not sit well with me.
“I am super-anxious for my son but this is bigger than us. We need to keep people accountable and make them realise the urgency.”
One of the original “miracle babies” of the cathlab’s early years in Port Elizabeth was Waylen Jones, 9, whose mother, Yolande Kruger, 35, from Kabega Park, said her son’s life was saved when he was only three weeks old.
He received treatment after doctors discovered his aorta was narrowed.
“He is our miracle child,” Kruger said. “He had a balloon placed in an artery.”
Waylen had to be refused treatment recently on February 27 because of the non-functioning cathlab.
“He was [also] booked to have heart surgery [two days earlier] on February 25 but they couldn’t help him.”
Kruger said paediatric cardiologist Dr Adele Greyling told her that her son did not need open-heart surgery.
“They can help him in the cathlab to close two holes in his heart when it is up and running again.
“Now we wait for a phone call. It is tough on me and my child. We prepared him for it and now we have to wait.
“He is very healthy but I am still afraid for him.”
In the close to six months the cathlab remained nonfunctional, hospital sources estimated about 600 patients, including scores of babies and children, could not be helped.
They confirmed this week there were some 160 children on the waiting list for heart surgery.
The sources said scores of patients were not making it onto the list as they cannot have angiograms that would give surgeons a clear picture of their heart condition.
“It is now becoming very urgent,” one source said.
Pepeta said he also feared for the future of the training unit he started to produce paediatric cardiologists for the state sector.
“The cathlab is a central part and really the core of our service to help children with congenital heart disease,” he said.
“The impasse absolutely widens the gap between private and public healthcare.”
Provincial health department spokesperson Lwandile Sicwetsha said the equipment for the new cathlab had been procured and they were preparing for its installation.
However, Sicwetsha would not commit to a date when the equipment would be up and running.
He said they had decided not to install the facility at Livingstone Hospital as this would have required further engagements with the clinical team and hospital management.
“We have agreed to decommission the present cathlab and install the new equipment [at Provincial Hospital].
“The new technology requires minor adjustments to the old infrastructure.”
He said this would include adjustments to the existing air conditioners, humidifiers and alterations to the power supply.
While Sicwetsha said in the interim all cardiac procedures requiring emergency intervention would be reviewed for management in the private sector as agreed previously, he admitted the agreement had yet to be finalised.
Netcare Greenacres Hospital manager Andre Bothma and officials at Provincial Hospital confirmed this agreement had not been finalised yet.
Sicwetsha said: “This is because an affordable model is still being negotiated and alternative arrangements within the public sector are being pursued.”
Genetic Alliance chair Dr Helen Malherbe described the situation as a crisis on a par with the one in KwaZulu-Natal when patients could not access life-saving cancer treatment.
In 2018, the South African Human Rights Commission intervened when there was a shortage of radiation machines in KwaZulu-Natal.
“The response should be the same. It is a human rights crisis. One in 100 South Africans is affected by congenital heart disease with over 8,000 babies born with the condition annually,” Malherbe said.
“Of these, 2,500 require lifesaving intervention in the first month of life or they will die.
“It’s the most common congenital disorder and ranks in the top 10 causes of death for newborns, infants and children under five,” she said.

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