‘When I started falling ill, I was pregnant with Baby T*. I was sick and limping for the entire nine months, not knowing what was wrong with me. When I gave birth to her, the paediatrician was the one that diagnosed her when she was 18 days old and that is when I found out that this entire time  I had been suffering from listeriosis,” Iris recalls. 

The origins of the outbreak

South Africa witnessed the world’s largest listeriosis outbreak, characterised by a progressive increase in cases of the disease from January 2017 to July 2018. Of the 1,065 laboratory-confirmed cases of listeriosis reported by the National Institute for Communicable Diseases (NICD), 218 deaths were recorded. 

Through contact tracing, whole-genome sequencing, epidemiological investigations and other scientific techniques, the NICD traced the bacteria which caused the outbreak back to an Enterprise Foods factory in Polokwane, Limpopo. The factory produced ready-to-eat meat products.  

Also read: Life After Listeriosis — Photo Essay

How Baby T was diagnosed

When Baby T was 18 days old, she fell sick and her mother took her to a paediatrician. “The paediatrician said that her head looks bigger, and it’s not how the head should look, ” Iris said.  

Baby T had contracted listeriosis in her mother’s womb and developed a condition called hydrocephalus, a build-up of fluid in the brain. A ventriculoperitoneal (VP) shunt — a thin plastic tube that helps drain the fluid from her brain — was inserted into Baby T’s head to manage her condition and, ultimately, save her life.  

“If she doesn’t have the VP shunt then the head will swell and the brain will be damaged,” her mother explained. Baby T will always have a shunt and it will have to be replaced periodically as she grows.  

“She’s only five years old, but she has already had six operations replacing the VP shunt because it can block at any time,” she said. 

“There will be scars on her head and even on the stomach because the pipe goes to the stomach, and when you hold her, you have to be extra careful not to hurt her.  

“The healing and recovery process is very painful. Very painful. I wouldn’t wish for anyone to experience this. No one. Not even my worst enemy. Not even Tiger Brands [the owner of Enterprise Foods at the time of the outbreak].”   

Life for Baby T now 

Doctors have told Iris that Baby T’s development milestones will be significantly delayed. Baby T only started speaking when she was three and she frequently forgets things she learned the previous day.  

“If she can write 1, 2, 3, I will be the happiest woman ever, because she can write them today but then tomorrow she will have forgotten,” Iris said.  

“This condition is very serious, and it is very painful.” 

A neurosurgeon explained to Iris that the part of Baby T’s brain that controls her bladder is only partially working.  

“She cannot feel when she needs to go to the bathroom and she is a laughing stock at school because when she wets her pants, the other kids laugh at her,” Iris said.   

Iris also contracted listeriosis and had to have a bilateral hip replacement. ‘A lot of people obviously forgot about listeriosis. If you weren’t infected or affected you will obviously forget, but that shouldn’t be the case,’ said Iris. (Photo: Supplied)

She sends Baby T to school with extra clothing in case of an accident. 

When an accident does happen, the teachers call Baby T’s older sister to come and help.

“They also laugh at her sister.  I remember the other day I was so heartbroken, her sister also didn’t want to go to school because she said, ‘I’m also the laughing stock at school because of my little sister.’ ”

Baby T is aware that she is different from other children. “Every time when she comes back from school with her wet pants, I will ask, ‘Baby T, what’s wrong?’ She will show me the VP shunt and say, “It is because of this, Mommy. I cannot feel that I want to go to the bathroom and it is because of this.’ ”

Surgery, debt, blame and relocation 

Iris also contracted listeriosis and had to have a bilateral hip replacement — the surgical replacement of both hips — on 4 February 2019.  

“I am still working with my condition, but it is not easy.  I can feel that my hips are aching and sometimes the pain is so severe, all I can do is just lay down,” she said.  

Iris has to go to the doctor every six months for a checkup and takes medication daily.

“Sometimes I struggle to walk. Even now, I can feel the pain on my left-hand side. It’s painful. That’s my life since I got listeriosis, that will be my life of taking pills each and every day,” she said.  

Iris has two other children aged 11 and 13, and said she and her husband had fallen into debt trying to manage both her and Baby T’s medical bills. The pair both have loans at the bank, with Iris owing roughly R60,000.

The financial situation became so bad, that they were forced to sell their beloved family home and relocate to a rural area of Polokwane in March 2023.

“I am not coping and I’m trying to hold on for these kids because if I can show them that I’m not coping, then for them it will be worse,” she said tearfully.  

Iris still blames herself for Baby T’s infection and said sometimes when she had an accident, she would yell at her. “I saw that there is no point in shouting at her because she’s not the one who infected herself, I am the one to be blamed,” she said.

Despite the challenges, Iris’s love for her children is unwavering.

“It has all been very difficult but I have to stand up for my kids. I have to do what’s right for them,” she said. DM

*Not their real names.

In Part Two of this story, we look at the class action launched by human rights lawyers to help victims of listeriosis like Iris and Baby T.