'I could tell it was a long painful death' – Mother of 9-year-old brain cancer patient speaks out

2018-03-10 08:52
PHOTO: Supplied

PHOTO: Supplied

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Durban – He was just 9 when he learnt he was going to die.

A nurse had whispered these words to his parents, thinking he was asleep, but the little boy heard every one of them. "She told us he had three months to live," Thandekile Khoza, 46, says.

"At that moment he opened his eyes and started to cry. He was visibly scared."

Qalokusha Zethembiso Msweli passed away not long after that, and his devastated mom wishes she had fulfilled his last wish. All he wanted was to go home and spend time with her, his dad Jabulani Msweli, 38, and his siblings, Sinethemba, 15, and Nkosiyazi, 5. But Thandekile wanted him to be in hospital so he could be given treatment for brain cancer before he returned to his home in Mtubatuba, Dukuduku.

He lost his battle against brain cancer on July 27, 2017, while waiting for radiotherapy treatment. Thandekile and Jabulani say their "sweet, praying boy" was treated only once in the 50 days he spent in hospital.

The heartbroken parents blame the beleaguered KwaZulu-Natal health department's oncology crisis for their son's untimely death.

Robbed of last goodbyes

"Had he received the treatment on time he'd probably have survived," Jabulani says. "But due to the delay and shortage of doctors my son died.

"We were all robbed of an opportunity to say our goodbyes," Thandekile adds. She starts to sob.

"His siblings would have had a chance to spend his last days with him."

The family's pain is echoed by hundreds of KwaZulu-Natal families. According to a report recently released by the South African Human Rights Commission (SAHRC) highlighting the state of healthcare services in KwaZulu-Natal, the rights of cancer patients are being violated because machines at state hospitals aren't functioning due to a lack of maintenance, and an exodus of specialists.

Inkosi Albert Luthuli Central and Addington Hospital don't have oncologists, says the DA's KwaZulu-Natal health spokesperson Imran Keeka.

"We have three hospitals that offer oncology services, two of those hospitals, Inkosi Albert Luthuli (Central) and Addington Hospital, don't have oncologists. Those who are working there are only doing so on a temporary and voluntary basis."

Too late for Qalokusha

According to Keeka: "Our oversight visits showed that hundreds of people are dying due to lack of cancer treatment."

Last month the department of health was set to hand over an action plan to the SAHRC outlining how it will roll out treatment to cancer patients and how it plans to get more oncologists in the department. But this came too late for Qalokusha.

Thandekile says she first noticed something was wrong with her son, a Grade 2 pupil at Mzabalazo Primary School, in January last year.

"He had an injury on his left hand. I took him to a local hospital where they treated him. But after some time his left foot also became weak and he developed a limp.

"Eventually his left-hand side became paralysed. We took him back to the hospital for check-ups but they couldn't find anything."

- Health24: Cancer

He was eventually transferred to Inkosi Albert Luthuli Hospital. Soon after his admission on June 2, doctors found a cancerous tumour in Qalokusha's brainstem and suggested radiotherapy treatment to stop the cancer from spreading. A day later they operated to remove the excess water from his brain so treatment could be started.

No treatment

Thandekile didn't give up hope after being told her son had three months left to live. Her hope was buoyed by a doctor whose name she can't recall.

"A doctor from the oncology department assured us he'd be fine as long as he receives radiotherapy treatment, which he received on 29 June.

"He also told us this treatment has to be repeated within five days otherwise Qalokusha would get worse," Thandekile says.

"We became worried when five days elapsed without him receiving the treatment."

Thandekile kept asking for a date for her son's next radiotherapy treatment to no avail.

"When I came to visit him on 19 July we found a note hanging on his bed. According to the note, he was supposed to receive treatment the next day but he never received it," Thandekile says.

"A nurse told me one of the doctors had not signed the documents for his treatment so they didn't give him treatment."

Thandekile persisted with her pleas for treatment and Qalokusha was given another date – July 20.

"The nurses allowed us into the treatment room, but when we got there he was turned away again.

"This time they said they lost his mask (which had been specially designed for him to administer his treatment) and he had to get a new one. A new mask was made but this didn't solve the problem because we were turned away for the third time. The nurses said he needed a signature from one of the doctors," she explains.

'I'm appalled at the way they handled this matter'

Qalokusha became weaker while they waited for a doctor to sign off on his treatment. On July 26 Thandekile was at his bedside, praying for a miracle.

"On that day I just couldn't sleep. I waited by his bedside. I stayed with him the whole night, watching him and listening to the life-support machines.

"In the morning, he died. There was nothing I could do except hold his hand and cry. I could tell it was a long painful death," she sobs.

Jabulani is enraged. He says a hospital official called him soon after his son's death.

"The official said I [should have] known my son would eventually die and there's nothing they could do. But this isn't the case. I'm appalled at the way they handled this matter."

Contacted for comment (at the time of publishing), the hospital referred us to the health department which failed to reply to our emails.

Unserviced machines

To add to their grief, Qalokusha's parents were forced to transfer their son's body closer to home at their own cost.

"Inkosi Albert Luthuli Central Hospital refused to transport his body to NPA Hospital (in Empangeni), which is closer to our home. Jabulani says they were helped by a local businessman.

Meanwhile, SAHRC spokesperson Gushwell Brooks says the commission is studying the KwaZulu-Natal health department's response to their report.

"We also made a recommendation that they need to have the machines up and running as soon as possible," he said.

According to him, the machines are out of order because they haven't been serviced. The department was instructed to hire private oncologists to assist but it's not known if they did so as they didn't reply to our queries at the time of publishing.

The SAHRC's Gail Smith adds the commission is aware of Qalokusha's case but declined to comment, saying only that the crisis was an being investigated. Meanwhile, Jabulani and Thandekile have to come to terms with living without their little Qalokusha. The department of health didn't respond to several requests for comment on the claims made by Thandekile and the DA.

Read more on:    durban  |  health

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