Parents of hydrocephalus children appeal for support

NAKASEKE/LUWEERO.

Parents in Luweero and Nakaseke districts with children suffering from hydrocephalus are seeking financial help after failing to raise money for treatment.
Hydrocephalus is a condition that occurs when fluid builds up in the skull and causes the brain to swell. Currently, there are 60 children suffering from hydrocephalus disease in the district.
CURE Children’s Hospital, a private facility in Mbale District, offers specialised treatment that includes surgical operation to drain the fluid from the brain, but the services have proved to be expensive for the parents.
The hospital charges between Shs750,000 and Shs 950,000 for the first treatment depending on the nature of the operation carried out. The patients are then referred to Katalemwa Ceshire Home in Kampala for review.
But many of the parents say they are unable to meet the treatment fees, with some resorting to traditional healers for cheaper services.
Ms Elizabeth Nakandi, a mother, says she spent all her savings on the first treatment of her son.
“I was advised to try the traditional healers after failing to take back my five-year-old son to Mbale for review. I spent more than Shs900,000 on the first treatment and have nothing left,” she says
Her ordeal is shared by several other parents in Luweero District who have children diagnosed with hydrocephalus.
Ms Milly Najjemba, a resident of Magoma Village in Nakaseke District, says she has visited several health centres, including Mulago National Referral Hospital after her son developed a swelling on his head.
“I was advised to travel to Mbale where I could access treatment for my three-year-old son but I cannot raise the money,” Ms Najjemba explains.
Ms Najjemba claims that she was advised by friends to raise Shs1m for the first journey to Mbale, which she would spend on medical checkup, treatment and upkeep for more than three weeks but has since remained home after failing to raise enough money.
She says her son’s condition is worrying as he cannot ably stand without being supported since the head is heavier than the rest of the body.
“We are now isolated because this kind of disease is rare in our community. Some people suggested and prescribed all sorts of treatment, including traditional healers who we gave the little money we had but unfortunately, we received no positive results,” Ms Najjemba explains.
Ms Beatrice Nalubaale, another mother, says, she has been to Mulago Referral Hospital and Mbale Children’s Hospital with her son and spent about Shs750, 000 for the first treatment at Cure Hospital.
“I have failed to pay Shs1m for my son’s second treatment due to lack of funds,” Ms Nalubaale explained in an interview.
According to the Nakaseke District councillor for people with disabilities, Mr Johnson Kamuhangire, while some parents link the disease to witchcraft, majority have simply given up on seeking medical treatment because of the costs involved in endless trips to health facilities.
Speaking to Daily Monitor in an interview, Ms Caren Kutoyi, the officer at the Intensive Care Unit at Cure Children’s Hospital, faulted some parents for being reluctant and failing to take the children, who received the first surgery for review at Katalemwa near Kampala City.
Ms Kutoyi says currently the hospital is overwhelmed by the big number of patients, who turn up for the special neural surgical treatment.