The Gauteng department of health has confirmed it is investigating allegations made by a woman from Eldorado Park, who developed Stevens-Johnson syndrome (SJS) – a potentially fatal skin disorder – after a doctor at Chris Hani Baragwanath Academic Hospital switched her epilepsy medication without disclosing the risks.
“Ms Venetia Khonkie has officially complained about the treatment received as a patient at Chris Hani Baragwanath Academic Hospital,” the department told The Citizen.
“The matter/allegations are being investigated, and the outcome will be communicated to her within the period that was explained to her on the day.”
Khonkie was first admitted to Bara in November last year after suffering seizures, and was subsequently diagnosed with epilepsy and placed on Epilim.
She said when she returned for a follow-up appointment in February, a doctor switched her medication to Lamotrigine, citing concerns about Epilim’s effects on pregnancy after Khonkie mentioned she might want children in the future with her partner.
She was given two packs of tablets – 25mg for the first two weeks and 50mg for the following two weeks – and sent home.
According to Khonkie, the doctor who prescribed the medication did not mention or discuss any side effects with her.
“She asked me if I want to have children again,” Khonkie said. “She gave me two packs of tablets and that was her only explanation why she changed my medication from Epilim to Lamotrigine.”
‘I thought it was pink eye, then blisters started forming on my neck’
Within days of starting the higher dose, Khonkie began experiencing alarming symptoms.
Khonkie revealed that she visited Eldorado Park clinic.
However, while waiting in line for what she initially mistook for pink eye quickly escalated.
She said her urine burned when she went to the bathroom and pimples began erupting across her neck, face and lips.
At the clinic, Khonkie said a nurse dismissed her concerns and instructed her to go to St John’s Eye Hospital, a referral Khonkie found baffling given that her symptoms extended far beyond her eyes.
“I lifted up my dress and said to her, but look at how my body looks,” Khonkie said. “How do you mean I go to St John’s? I can’t understand.”
The nurse reportedly offered no medication and conducted no urinalysis.
She added that no ambulance was arranged despite the circumstances.
The following morning, her condition had deteriorated so severely that she called an ambulance herself.
“I woke up and I saw large blisters at the back of my neck, from my ears,” she said.
Rushed to Bara, where specialists were already waiting
Upon arrival at Bara, Khonkie was met by a team of specialists, including a dermatologist, who immediately recognised her condition as Stevens-Johnson syndrome.
She was admitted on the spot.
A skin specialist explained that SJS is a severe allergic reaction triggered by medication, and that it is a known and relatively common side effect of Lamotrigine.
“He said to me it’s a deadly disease, you can die from it,” Khonkie recalled.
By the next day, Khonkie’s skin had begun to detach.
She said she sustained what she describes as third-degree burns from the top of her head down her face, neck, back and across her private areas, both internally and externally.
Her eyes were severely affected. She could not open her eyes or see properly. She was placed in nappies and fitted with a Continuous Positive Airway Pressure machine, which delivers a stream of pressurised air through a mask to keep the upper airway open during sleep.
“Someone came to visit me in the hospital and couldn’t even recognise me,” she said. “I was black – like the colour black – because of the burns.”
Over the two weeks she was hospitalised, she says approximately 20 doctors attended to her, including neurologists, dermatologists, gynaecologists and eye specialists.
Her medication was ultimately changed to Keppra.
‘She didn’t give me the chance to decide’
At the heart of Khonkie’s complaint is a straightforward allegation: the doctor who changed her medication failed to inform her that Stevens-Johnson syndrome was a possible and well-documented consequence of Lamotrigine, and in doing so, removed her ability to make an informed decision about her own health care.
“If that doctor was honest with me and said, ‘This medication has side effects,’ I could have made that decision then,” Khonkie said.
“I could have said this is on me and I can take responsibility. But she didn’t give me the chance to decide what I want to do.”
The department, in its response, acknowledged the obligation that exists on the part of prescribers.
“According to the Safe Administration of Medicine Standard Operating Procedure, prescribing doctors and/or pharmacists are obliged to inform patients of side effects as well as how and when to administer the medicine,” it said.
Missing file allegation disputed
Khonkie also alleged that her patient file went missing after her partner handed it to nurses at admissions when she was rushed to Bara in February.
She said the file was critical to helping doctors understand what had caused her reaction.
The department, however, denied that any file had been lost.
“The hospital has in its possession the in-patient file,” it stated. “The hospital therefore did not lose any file as alleged.”
The department added that due to patient-doctor confidentiality, it was limited in what it could disclose publicly about the specifics of the case.
Financially crippled, unable to work and battling for her sight
Now several weeks out of hospital, Khonkie’s recovery is far from over.
She attends Bara weekly and has upcoming surgery at St John’s Eye Hospital to address a complication in which her eyelids have fused to the surface of her eyes.
“They want to do an operation on me because my eyelids stick to the ball of my eye,” she said. “So they need to loosen the eyelids and I can’t see properly.”
The physical toll is matched by a financial crisis.
Khonkie is a self-employed hairstylist, makeup artist and lash technician.
She uses these skills as her only source of income as a single mother of two.
However, she is currently unable to work.
“Right now I can’t generate any money because I can’t see well and my hands – I can’t use any products on my hands because of my skin condition,” she said. “I can’t make any money. I can’t provide basically for my children right now.”
She and her two children are surviving on approximately R2 000 a month in government grants.
Khonkie revealed that she has received a bill for R1 200 from Bara.
“I have to pay R200 to go to hospital and come back, and on top of that I need to pay for my medication to be dispensed,” she said. “How can I pay them if they are the reason why I am ill right now?”
Psychological support offered, but out of reach
The department stated that it “will continue to support her both physically and mentally,” and noted that Khonkie has been offered psychological support through a group session at Bara on Fridays.
However, Khonkie said the support is effectively inaccessible given her circumstances.
“I need to pay to get to Bara every Friday, but with what money?” she said.
“My body is not fine. It will take maybe six months to one year for my body to fully recover. How am I going to take care of myself and my children for the next 12 months?”
The department reiterated its position that it does not provide transport to patients accessing its services, including psychological services.
“The hospital does not offer transport to patients who need services including psychological services,” it confirmed.
Department committed to quality care, investigation ongoing
At the time of our investigation, Khonkie said she was in the process of submitting her formal complaint form to the department.
She said she wanted the hospital to take full accountability, not just for her medical costs and lost income, but for the broader impact the incident has had on her family.
“My children went through so much trauma. They didn’t do well in their first term,” she said.
“My body will never be the same again. They have damaged me and hurt me in many ways – not just one: mentally, physically and emotionally.”
The department said it remains committed to resolving the matter.
“We are committed to always providing quality healthcare services to all our patients,” it said, “and Ms Khonkie is currently receiving medical care and we will continue to support her both physically and mentally.”
The investigation is ongoing.
