In early June 2021, President Yoweri Museveni banned private and public transport as part of the strict lockdown re-imposed in an effort to curtail the spread of Covid-19 variants.
The newest lockdown measures for 42days prohibited transportation inside and across country districts, even in Kampala but the only exceptions to the rule were vehicles transporting cargo, the sick and essential workers.
Allowed travelers were supposed to get licenses from the Ministry of Works and Transport or a letter from the village chairpersons.
Cathy Nakanyiga, born with Spina bifida narrates her experience during the lockdown saying that she became sick and attempted to leave Katale in Entebbe where she resides to the Doctors’ hospital at Sseguku for treatment.
Accompanied by her relative in a family van, they were blocked along the way on Entebbe road by security officers as they were accessing Sseguku since the vehicle they were using had no stickers from the Ministry of Works and Transport.
“I remember in the first lockdown I became sick and when I tried to move to the Doctors Hospital for treatment at Sseguku, we were stopped at one of the checkpoints. One of the security officers who was dressed in a camouflaged police uniform came close to the driver’s window and asked for documents permitting us to move,” Nakayinga explains.
“My relative who was driving the car immediately pulled out the medical documents together with a clearance letter from the village chairperson as he continued to explain to him about my condition and where we were going. But the officer didn’t listen, insead tore our travel document and sent us back.” Nakayinga painfully adds.
She says that they were left with one option of contacting the leadership of the Spina Bifida and Hydrocephalus Association Uganda-SHAU for help. SHAU responded immediately with a branded vehicle which picked Nakayinga and the relative from where they had got stuck to the Doctors’ Hospital.
“When we reached the hospital, I was admitted because the situation had deteriorated, but I attended too and recovered in the following days” Nakayinga narrets.
Barbara Kirabo, born with Spina Bifida and Hydrocephalus says she experienced the worst environment to live in during the lockdown when she was segregated by the village mates in the community which made her develop depression.
Cathy Nakayinga who is also a Clinical Psychologist working with CoRSU Rehabilitation Hospital which is a specialized surgical hospital in the at Kisubi along Entebbe road in Buganda Region of Uganda says there were many children born with Spina bifida and hydrocephalus that developed wounds on their bodies during the lockdowns due to failure to access hospitals and many ended up losing some of their body parts like hands and legs.
Spina bifida is one of the commonest birth defects caused when the spine and spinal cord fail to properly develop within the first 28 days of conception. Hydrocephalus is a condition that occurs when fluid builds up in the skull of a developing fetus and causes the brain to swell but children with the condition normally have big heads.
The 2018 data from the Ministry of Health shows that the number of Ugandans suffering from the two conditions increased by at least 600 people in the previous seven years. Records show that around 1,500 people attend rehabilitation for the conditions each year.
It is estimated that around 1000 and 1400 children are born with either hydrocephalus or spinal bifida each year respectively.
Nakayinga says that children with Spina bifida and hydrocephalus survive on medication in that every two months they have to access medical reviews, occupational therapy and physiotherapy.
Ibrahim Musoke, the Chairperson Board of Governor for Spina Bifida and Hydrocephalus Association Uganda-SHAU and also a parent for the child with Spina Bifida says that they received about 10 cases of such children abandoned by their parents during the lockdown. Most of them were very sick yet others were malnourished.
He adds that other children with spina bifida and hydrocephalus were not fed well by their guardians during the lockdown and some ended up dying.
Winfred Nabikolo, the Patients Liaison Officer at SHA-Uganda says that a number of children and even older persons living with Spina Bifida and hydrocephalus died at their home for failure to reach out to hospitals for treatment which was due to movement restricts during the lockdowns.
According to Nabikolo, there are only three major hospitals working on these children that include Mulago National Referral in Kampala, CURE Children’s Hospital in Mbale and another in Mbarara owned by SHA-Uganda.
Reaching out to the Deputy Police Spokesperson in Kampala Metropolitan area, Luke Owoyesigyire says they didn’t register any case of such children blocked from accessing hospitals during both 2020 and 2021 lockdowns.
