‘I just want my lips back’

“I just want my lips back.”

These were the words of 12-year-old Benoni !Oxurus from Kalkrand, whose life changed after five surgeries on her mouth left her disfigured in 2019.

With tears running down her face, Benoni told The Namibian yesterday that she wants her old life back. She was murmuring during the interview, her little voice barely audible.

Her fate now lies in the hands of South African reconstruction surgeons, where she has been referred to for cleft surgery, after surgeries in Namibia’s state hospitals were unsuccessful.

On 17 December 2019, when she was nine, Benoni’s entire life changed.

Benoni, who can only eat liquid food through a pipe, woke up one morning with a rash on her upper lip.

Both her upper and lower lips were subsequently removed by state surgeons, who alleged that this was the only way to save her life.

Speaking to The Namibian yesterday, Benoni’s mother, Delina !Oxurus expressed frustration with the never-ending surgeries which have led to her daughter missing out on school.

“I feel they must finish with the child. The child must go to afternoon classes but she is embarrassed,” !Oxurus said.
Benoni has been out of school for two years.

WHAT HAPPENED?

!Oxurus said when they first visited the hospital, her daughter was given medicine to treat the rash.

“She got ringworm on her upper lip. Then we went to the clinic and got medicine. We came back [home]. We went [to the clinic] again after two weeks and they sent us to Mariental [District] Hospital,” said !Oxurus.

“Then Mariental’s doctors sent us to Katutura hospital. There the skin had to be removed. The mouth was open here (pointing to her upper lip),” she said.

!Oxurus said the doctors removed skin from her nose to cover her upper lip.

This surgery was conducted by one Cuban and one Chinese doctor at the Katutura Intermediate Hospital in June 2020, she said.

“They said it is not ringworm, but a spider bite,” the mother said.

The same sores came out on her lower lip not long afterwards.

“[With] the second operation, Dr Hange took over. Those sores came out on her lower lip. Then Dr Hange cut off the lower lip,” she said.

At this point, !Oxurus was told that all Benoni’s woes stemmed from the spider bite.

After her third surgery to fix her lip, Benoni stopped going to school on the recommendation of her teachers.

Benoni’s last surgery was in April last year, after which the Namibian doctors indicated that she needed surgery in South Africa.

Upon inquiry on !Oxurus’s condition with her current doctor, maxillofacial and oral surgeon Dr Rikotamenee Hange on Tuesday told The Namibian the child has deep drug resistant mucormycosis.

The Centres for Disease Control and Prevention describes mucormycosis as a serious but rare fungal infection caused by a group of moulds called mucormycetes.

These moulds live throughout the environment. Mucormycosis mainly affects people who have health problems or take medicines that lower the body’s ability to fight germs and sickness.

“A haematologist has been co-managing the patient with us. The paediatrician has been managing the patient with us. [The] dermatology department has been with the patient since 2018 and 2019 was referred to maxillofacial [sic],” he said.

He emphasised that they took a multidisciplinary approach.

“All primary and secondary immune deficiency syndromes including globulins and diabetes were ruled out. [A] computed tomography scan was done,” he added.

The specialist said Benoni is alive because for eight years the doctors have been fighting for her life. Dr Hange cancelled the interview to find out more about !Oxurus’s condition and medical journey.

He referred The Namibian to the superintendent of the Katutura Intermediate Hospital, Dr Nelao Amagulu.

Amagulu has not responded to any questions or calls made to her regarding Benoni’s medical treatment history, while a visit to the hospital to see Dr Amagulu proved futile as her assistant said she was not available.

MEDICAL COMPLAINT

A letter of complaint was sent to the Health Professions Councils of Namibia about !Oxurus’s medical treatment.

The council’s registrar and chief executive officer Dr Cornelius Weyulu confirmed receipt of the letter and said investigations have started.

“The complaint is currently in the investigative phase under the preliminary investigation committee. Upon receiving Dr Hange’s response, the matter was promptly brought before the committee,” the response read.

This committee has gotten “additional” information from Dr Hange and sought an expert opinion from a maxillo-facial and oral surgeon.

“Due to the limited availability of such specialists in Namibia, we have reached out to a South African expert for their opinion. We are currently awaiting the expert’s assessment,” the council said.

Weyulu indicated that after the investigation by the preliminary investigation committee, the council may decide to either close the case, or refer it for professional conduct inquiry.