Families of children with hydrocephalus share their struggles

Trish Mukwazo, trishmukwazo515@gmail.com

MRS Nontando Muchikura from Nguboyenja suburb in Bulawayo was overwhelmed with emotion as she shared the story of her son, Simbarashe, who has been battling hydrocephalus and spina bifida right from birth. 

Hydrocephalus is a condition wherein there is an excessive build-up of fluids in the brain while spina bifida is a congenital disability that occurs when the spinal cord doesn’t develop properly. 

Unfortunately, due to these conditions, Simbarashe has been wheelchair-bound for his entire life and has had to face discrimination and stigma from society.

Initially, Mrs Muchikura struggled to come to terms with her son’s condition and was in denial but with her husband’s unwavering support, she finally accepted it. 

However, even after accepting it, the family struggles to meet Simbarashe’s basic needs, such as diapers and soap, due to financial constraints. This is a challenge the family faces on a daily basis.

“My son is very intelligent. A psychologist once recommended enrolling him at King George School, but due to financial constraints, I had to enrol him in a local school in Nguboyenja,” she said.

Mrs Muchikura said managing her son’s health has been an uphill battle due to the high cost of medication and her inability to secure employment. 

Ms Skhululiwe Ncube, another mother, shared her story of raising her seven-year-old son, who was also diagnosed with spina bifida. Her son has used a wheelchair and diapers his entire life.

“We’ve faced all forms of discrimination. Some landlords have denied us accommodation because they can’t accept my son’s condition,” she said. 

Ms Ncube said her son has never attended school due to his condition, and she struggles to find work because there is no one to look after him.

“Whenever I go out to earn a living, I have to take my son with me. We seek a society that is inclusive and doesn’t discriminate against children like mine,” she said. 

To support children living with these conditions, the Hydrocephalus and Spina Bifida Foundation, in collaboration with Matabeleland Nomads, yesterday donated 44 shunts worth US$5 000 to Mpilo Central Hospital’s paediatric ward during the belated International Spina Bifido and hydrocephalus Day commemorations.

Speaking at the event, Pastor Lynn Ndlovu, founder of the Hydrocephalus and Spina Bifida Foundation, said the donation coincided with Hydrocephalus Awareness Day, which highlights the need for accessible healthcare for children with neurological conditions. 

“Every  child deserves the right to treatment, care and a chance to thrive. My personal journey began when I met a brilliant child with hydrocephalus who, unfortunately, passed away due to a lack of resources and proper care. That experience ignited my passion to make a difference,” she said.

Pastor Ndlovu commended Mpilo Hospital for its partnership, which has been instrumental in improving the lives of affected children.

“Our collaboration is driving us closer to finding better treatments and improving care for these children,” she said. 

Hydrocephalus and Spina Bifida Foundation’s research director, Professor Greanious Alfred, said he partnered with the foundation to serve humanity and make life better for those battling the condition.

“As we continue to work together, our goal is to achieve our shared objectives and create a positive impact in the community and I’m thrilled to see our collaboration bearing fruit,” he said.

“We’re committed to allocating resources to mitigate the challenges posed by hydrocephalus. We appreciate the efforts of the association in setting aside funds specifically for this condition. It’s rare to find dedicated support, and we’re grateful for this initiative.”

Children diagnosed with these conditions in future stand to benefit from ongoing research conducted by the National University of Science and Technology (Nust) Faculty of Medicine, which is working to develop improved treatments.

Bulawayo Provincial Affairs and Devolution Minister, Judith Ncube, praised the foundation’s efforts in a speech read on her behalf by Ms Boetsoarelo Noko, director of provincial co-ordination in her office.

“The Hydrocephalus Foundation has made significant strides in improving healthcare services for children with hydrocephalus in the southwest region of Zimbabwe. Their work aligns with the Government’s vision to leave no one behind,” she said.

Minister Ncube commended the foundation for sourcing essential medical equipment, renovating facilities and providing ongoing support to children across the country.