Too young for pain: inside the lives of children growing up in hospital wards

Two-year-old Tetsembiso Bhembe should be spending his days playing with other children and making memories with his siblings.

Instead, much of his young life has been spent in hospital wards after being diagnosed with Wilms tumour, a type of kidney cancer.

Tetsembiso’s mother, Ncobile Tsabedze, recalled the moment she realised something was wrong with her son.

She said she noticed swelling on the right side of his stomach but did not understand what was causing it. A few days later, he developed a high fever and when she changed his diaper, there would often be blood on it.

Doctors discovered a tumour during an ultrasound scan before he was transferred to Chris Hani Baragwanath Academic Hospital, where he was diagnosed with Wilms tumour.

Since then, the toddler has spent nearly a year in and out of hospital receiving treatment.

During the Reach for A Dream Slipper Day annual fundraising initiative held at Chris Hani Baragwanath Academic Hospital on Thursday, Tsabedze said her child was one-year-old when he was diagnosed.

“As a mother, the first prayer you make while pregnant is for your child not to fall sick. When something of this magnitude happened to me, I questioned God. Am I being punished or is this a lesson of some sort?”

She said on many occasions she was scared she would wake up to bad news. “You constantly live on the edge because this disease is deadly.”

Tsabedze described her child as care-free and playful. “My baby loves people. Whenever he gets an opportunity to play with other kids, he does. It’s as though he’s aware of his condition and every second of life should be cherished.

“It saddens me that he’s missed out on playing with other kids at home and bonding with his siblings. He lives like he is alone on Earth,” said Tsabedze.

She said caring for a child with a life-threatening illness has been emotionally draining. “My strength comes from God because I cannot do this alone. Being away from your family for a long time is stressful and you are always scared something bad might happen.

“There are moments when you break down and feel helpless,” Tsabedze said.

Despite the challenges, she continues to dream about a future beyond hospital walls for her son.

“I want my child to experience a normal life and grow with other kids. I want him to become a doctor one day,” she said.

For another mother, Sbongile Mcwabe from Winchester Hills, the diagnosis that changed her family’s life came after her daughter complained about pain in her left leg.

Her 16-year-old daughter Samkelisiwe Kabinde was diagnosed with cancer when she was 15.

“My daughter was a tennis player at school and I initially believed she had suffered a sports injury because she would complain about pain in her left leg,” she said.

“When the doctors did an X-ray, they found swelling in her leg. When they did a biopsy, they found she had cancer and had to amputate her leg,” Mcwabe said.

She described the decision as one of the hardest moments to accept. Though the road has been difficult, Mcwabe said her daughter is coping better emotionally.

She advised parents not to give up: “Have faith, support your children and don’t lose hope.”

Paediatric oncologist at Baragwanath Hospital Dr Thandeka Ngcana said children who spend long periods in hospital often become like family to the doctors and nurses who care for them.

“Treating children who stay long is like being with your own family. You develop a bond with them,” she said. “This job can be heavy, especially if the children are the same age as your own.

”Children are meant to be with their families. They are not meant to suffer. They are too young for pain,” she said.

Reach for A Dream’s Johannesburg leader, Boitumelo Kumalo, said the fundraising initiative allows them to bring joy to children with life-threatening illnesses by making their dreams come true.

“We are all about celebrating hope and the children’s strength in a space where they can be children.”

TimesLIVE