By Kabuye Ronald
Parents of children with Spina Bifida and Hydrocephalus condition have called for collaboration with all private and public entity in the fight of giving a better life to patients with the condition.
The call has been made by Ruth Nalujja, the National coordinator of Spina Bifida and Hydrocephalus Association of Uganda (SHAU) during the commemoration of the world Spina Bifida and Hydrocephalus day in Kampala.
Nalujja said that they have spent the big part of October in holding stakeholders’ engagement at district, regional and national level where a lot of information awareness was done which has resulted into the stakeholders making commitment to supporting children born with Spina Bifida and Hydrocephalus condition through the existing structures.
She added that such collaboration with all stakeholder will help them make more inputs, for a betterment of the inclusive service delivery for the Spina Bifida Patients.
Samalie Matovu Nandala, the executive director of Katalemwa Cheshire home said that in a month they rehabilitate about 80-100 children with the condition.
She added that in a bit to reduce the expense of buying supporting devices to the patients they started fabricating appliances such as walkers, wheel chairs among others. She also called upon government to allocate some funding towards the people with such condition.
In the same way, the deputy executive director of Mulago National Referral hospital Rose Byanyima appealed to government to improve access to care and also awareness to the public especially on the dos and don’t’s to in order to reduce on chances of women giving birth to children with the conditions.
She also urged the public not stigmatize and victimize mothers who gave birth to such children and the children themselves especially with assertions of having a stanic attachment. She emphasized that giving birth to children with such conditions is normal.
In Uganda, Its estimated that annually 6000 to 8000 are born with spina bifida and hydrocephalus condition which condition needs expensive specialized health care only be found in only Mulago National Refferal Hospital, Cure children hospital in Mbale and Mbarara regional referral hospital which only has one surgeon.
According to the specialists the cost of surgery doesn’t go below five million shillings and yet patients go through several surgeries in addition to payment for services and rehabilitation which include: physiotherapy, occupational therapy and nutrition therapy and buying systemize devices which are expensive.
To make the matters worse the country has only one rehabilitation center in each of the four country’s region which makes the patients and parents incur a lot of transportation to them.
According to researchers, Spina Bifida can only be prevented to 70% if a woman takes folic acid before conceiving and has such, ministry of health commenced with the program of giving out folic acid to all menstruating girls in schools.
