Masindi parents of children with hydrocephalus grapple with stigmatisation

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Parents of children who are born with hydrocephalus and spina bifida complications in Masindi district say they are grappling with the increasing stigmatisation, rejection and isolation.

Hydrocephalus is a neurological disorder caused by an abnormal buildup of cerebrospinal fluid in the ventricles (cavities) deep within the brain. According to the National Institute of Neurological Disorders, this excess fluid causes the ventricles to widen, putting harmful pressure on the brain's tissues.

These are always caused by lack of adequate folate and folic acid in the body of a pregnant mother, especially during the first 28 days of pregnancy.

Explaining their plight to New Vision Online, different parents explained that when a child is born with such difficulties, they go through a lot to raise them.

Parents of children who are born with hydrocephalus and spina bifida complications in Masindi district say they are grappling with the increasing stigmatization. (Photo By Yosam Gucwaki)

Esther Nyangoma, a parent from Kihande 1 cell in Masindi municipality, who has a child suffering from hydrocephalus, says when she gave birth to the child, she was rejected by the family members.

"We are sometimes rejected, isolated and also stigmatised. After producing my child five years a go I was almost chased by family members associating the incident with Satan on the side of our family. A meeting was convened to chase me away," the mother, who spoke on condition of anonymity, says.

Remove taxes on assistive devices

The parents have also cried to the Government to remove taxes levied on the assistive devices normally used by children with such difficulties.

They argue that this will enable them to easily afford to purchase them.

Lydia Katusabe, a parent from Kamurasi cell, says children with such difficulties require assistive devices but they're expensive to buy calling upon government to look into it and address the issue of taxes.

Semeo Busobozi, from Kisidizi cell in Karjubu division Masindi municipality whose child is now five years old says getting treatment of a child born with such complications is a hurdle.

"My child was operated [sic] but it was a hurdle and if it wasn't the implementing partners I would have lost her. You spend much money in terms of transport, care and feeding, among others and the worst part of it is it's hard to accept the situation as a person. Unless you accept the situation, you can't raise a child born with such complications. Our prayer to the Government is to remove taxes on the assistive devices required to raise these children," Busobozi says.

He adds that apparently, he failed to raise fees for his child because he can't manage to buy diapers daily.

Flora Magezi from Biizi cell in Masindi municipality, says she has no money to buy assistive devices for her grandchild because they are too expensive.

"This child is now five years but it has been a hurdle raising him. Her mother dumped her to me while he was three years. Getting a solution to the problem is a dream. I am told to only keep on exercising him. What is helping me is the rehabilitation I went through by Katalemwa Cheshire Home but when you're not rehabilitated, it's very hard to accept to stay with children born with such difficulties," she said.

Geoffrey Okeng from Kibamba village in Pakanyi sub-county told this publication that he no longer has money at all because whatever he gets is spent on the child.

"My child was very normal at birth but the complication came at five months. I was given a referral to Mbale Cure hospital but I have no where to start from. Getting an assistive device is also a hurdle," he said.

Caroline Basemera, from Katama cell in central division says her child was born with Hydrocephalus but underwent surgery and successfully healed at Mbale Cure hospital.

Basemera says she was forced to quit the job after giving birth because there's no one else who could manage her child better.

She noted that it was rehabilitation which helped her to accept the situation, adding that she was happy because her child healed, is walking and also able to talk.

"My child was born with a big head containing water. I am telling you it's not easy but you have to believe God and it's very worse when you associate it with Satan. It needs a parent to give time to a child because the maid can't manage. If I had not quite my job, my child would have died. My advice to parents who have such children, is to avoid home treatment but to always go to health workers. If it wasn't the Doctors my child wouldn't be like this," she added.

The parents expressed their concerns on September 20, 2024, during a health camp which was organised by Katalemwa Cheshire Home at Masindi Hospital who were doing a follow up on the cases they had handled and also working on the fresh ones.

Over 60 children suffering from the two complications were brought for the service from across Masindi district.

State of Masindi

According to Masindi Hospital orthopaedic technician Brian Mugabi, the magnitude of the problem is big, adding that at least every village has two to three cases of hydrocephalus or spina bifida. Masindi district has over 400 villages.

"Some times you try to treat spina bifida but it turns to hydrocephalus and the biggest challenge we have is most people are not aware of these difficulties since most of them associate them with Satan," Mugabi says.

He added that awareness is still poor since these services are far away from the parents of these victims.

"These children are expensive to manage and devices are very expensive. They need extra care and time and to make matters worse as a hospital we are also lacking the assistive devices. Because of lack of these equipment, there are services we can't provide," he noted.

"We try to do sensitisation whenever we have camps like this but the biggest challenge these mothers are going through is the stigmatisation by the community which compels the parents even to hide their children born with such difficulties," he said.

William Mwambu, the councillor representing persons with disabilities (PWDs), said: My appeal to the Government is to establish orthopaedic workshops at every district hospital and government should subsidise the equipment which cannot be made at the workshops. Government should improve rehabilitation services because people don't know the equipment to use because you find some supposed to use clutches using calipers.

"We need a lot as PWDs including the white cane which is between shillings 200,000 and 300,000. A good assistive device for children with Hydrocephalus is between shillings 500,00 and 800,000," he said.

Olive Nabiryo, the head of the medical section at Katalemwa Cheshire Home, said the health camp was organised in preparation of Hydrocephalus Day celebrations which is always celebrated every October 25.

"This is still a big problem because in central region alone, we receive1,060 children every year and remember some of them have no accessibility. We rehabilitate children between 0-18 years and during such camps we give nursing care, occupational therapy, physiotherapy, orthopaedic management and counselling to the parents and the other care givers," she said.

She noted that the most problem children and the parents are encountering is the accessibility to the rehabilitation services, adding that most districts have no such services.

"The issue of high taxes levied on the assistive devices also needs to be looked into by the Government because to import these devices is too expensive and once the taxes are high, it means we are going to provide those devices at a higher cost and most of the parents are vulnerable. Remember once we don't provide them with these devices, they get other deformities which end up causing secondary complications," Nabiryo said.

400,000 cases worldwide

According to the World Health Organisation (WHO), hydrocephalus is still one of the most common birth defects globally, with an estimated 400,000 new cases per year worldwide.

According to a systematic review, Africa has the highest pooled estimated incidence of congenital hydrocephalus.

The mortality rate for hydrocephalus and associated therapy ranges from 0 to 3%. This rate is highly dependent on the duration of follow-up care. The shunt event-free survival is approximately 70% at 12 months and is nearly half that at 10 years, post-operatively.

Folate, the natural form of folic acid, can be found in a wide variety of foods, such as green leafy vegetables (e.g. spinach, cabbage), broccoli, oranges and yeast extract.

It’s important to eat a healthy and well-balanced diet, with lots of natural source folates, especially if you are pregnant or planning a pregnancy. Overcooking and poor storage of these foods can reduce their nutritional content.