Activists worried over Uganda’s growing number of children with disabilities (PWD’s).

Two years ago, teacher Seraphina Apio (pseudo name) was very passionate about having a child of her own, the fact being that she came from a school background where she related with quite a number of children that she admired-a missing link for any happy woman.

Despite a number of gynecological issues that Apio was facing; she never gave up her dream of becoming a mother one day. On several attempts to conceive, she visited different gynecologists with hope against all hope that advice and treatment would pull off results.

Finally, in 2019, Apio gave birth to a beautiful bouncing baby girl who weighed 3.5 kilograms. Apio’s joy was just, but for a short time. It was four months then, when she needed to start training her baby on sitting when she discovered her baby girl could hardly support herself from the neck area. This seemed quite abnormal on her side considering that at this stage, the child was strong enough to sit on her own; in other words, what the baby lacked was head control which also affected her ability to be an active child.

 After seeking medical services at the regional referral hospital in Soroti, I was advised by the pediatrics specialist to seek further specialized attention at Cure children’s hospital in Mbale, Eastern Uganda.

 ‘’Painful an experience as it was, I was advised to visit Cure where I was told that my baby had developed a neurological condition; emanating from prolonged labor, Apio said.

CURE Uganda is one of Africa’s leading pediatric hospitals for brain surgery and the treatment of neurological conditions. It provides minimally-invasive endoscopic neurosurgical procedures and attracts surgeons from around the world to its prestigious CURE Neuro Fellowship Program. The teaching hospital consists of three operating rooms, an 18-bed Intensive Care Unit and 37 Ward beds.

 

Figure 1 Cure Children's hospital Uganda(photo credit: Cure Uganda)

Approximately 1,500 surgical procedures are conducted annually for children with conditions including hydrocephalus, spina bifida, brain tumors, and other neural tube defects at the Hospital. The hospital also ministers to the emotional and spiritual needs of patients and their communities.

In Uganda nearly 5,000 children are born with hydrocephalus every year. Hydrocephalus is the accumulation of too much fluid in the brain and spinal cord. It is not a disease but a condition and has several causes.

 Should I worry when my baby is not sitting?

According to Joanne Lewsley, While you can support your baby in a sitting position almost from day one, sitting independently doesn't begin until your baby has head control.

Your baby will be able to sit well with support, holding her head up and her back straight. She’ll be able to sit in a tripod position, with her legs out to the side and her hands outstretched between them to support her. Your baby may be able to sit for a moment without your help. Make sure you stay nearby to provide support, or surround her with pillows in case she falls.

Health specialists also say that at Seven months to eight months, your baby may be able to sit unsupported with her back straight. This will free her hands for exploring, and she'll learn how to turn when sitting to reach for a toy.

At this point she may even be able to get into a sitting position from lying on her tummy by pushing up on her arms. By the time she's eight months old, she's likely to be sitting well without support.

 What should you do if you suspect a developmental delay in your child.

 If your baby isn’t sitting on their own by age nine months, contact your pediatrician. It may be good to act sooner, especially if your baby is close to 9 months and is unable to sit with support. Development varies from baby to baby, but this may be a sign of a gross motor skill delay.

Other possible signs of motor delay include:

• stiff or tight muscles
• floppy movements
• only reaches with one hand over another
• does not have strong head control
• does not reach or bring objects to mouth.

 There is help if you suspect your child may have a delay. First speak with your doctor or nurse. They may refer you to services for infants and young children, like your state’s public early intervention program.

 What the Spina Bifida and Hydrocephalus Association Uganda-SHAU is doing.

 Ruth Nalugya, the country director Spina Bifida and Hydrocephalus Association Uganda-SHAU, noted that the major focus is supporting children born with neurological conditions, Spina bifida and hydrocephalus country wide. According to Nalugya, the number of people affected by Spina Bifida and hydrocephalus has increases over the years because most Ugandans have failed to live healthy lifestyles among which she says is eating foods that are rich in iron and folic acid regularly.

The general secretary SHAU Charles Ochom, noted with concern that many parents feel ashamed to introduce, or bring out the disabled children in public, a practice he says deprives them of their human rights to associate with other able bodied people.  He also encouraged parents to desist from calling disabled children a curse.

 

Figure 2A baby living with Hydrocephelus (Photo credit: Child-help International)

According to Nalugya, the country director of the association worries that Uganda has a growing number of people with disabilities, adding that up to 14% of Uganda’s population among other stakeholders is contributing towards ensuring a reduction in the growing number of persons with disabilities (PWD’s).

William Eidu, a parent and a member of the association applauded SHAU for its efforts in supporting children living with Disabilities and have asked for its continued operations in the country. He called on parents to refer cases of Spina Bifida to the health personnel for specialized care.

 

Figure 3 A boy who received a wheelchair from OJ Disability Organization in Teso region, Uganda.