Down's Syndrome in Uganda

Down's syndrome (DS) or Down syndrome is a common genetic disorder caused by an extra copy of chromosome 21. DS is commonly associated with growth delays, characteristic facial features, and mild to moderate intellectual disability (see Wikipedia).

The parents of children born with DS are often normal. The extra chromosome comes by random chance during reproduction. Worldwide there is a 1 in 1,000 birthrate for DS.

The child with DS may be very healthy. However some children have serious problems. As a result it is recommended that children see a pediatrician regularly to pick up problems before they occur. Some of the problems are listed below (see NHS UK): 

Heart problems : Around 50% of children are born with a congenital heart defect.
Gut problems :  Constipation, diarrhea and indigestion are common.
Hearing problems : Most people with DS have hearing problems.
Vision problems : It is common for people with DS to have some problems seeing.
Thyroid problems : Affect one in 10 people with DS.
Increased risk of infections : The immune system does not develop properly with DS.
Dementia : People with DS tend to develop dementia from around the age of 40.

The Global Impact of Birth Defects report notes:

The birth prevalence of birth defects of genetic or partially genetic origin appears similar throughout the world...

However, some specific conditions like:

Down syndrome and neural tube defects (spina bifida) have higher birth prevalence in middle- and low-income countries. The birth prevalence of birth defects is, therefore, about 20 percent higher in middle- and low-income countries than in high-income countries.

Women over 35 years old and men over 55 years old have a higher birthrate of DS children increasing to between 2 and 3 per thousand. 

The Global Impact of Birth Defects report highlights the following example:

In rural South Africa in the early and mid-1990s, for example, the birth prevalence of Down syndrome was reported to be 2.09 per 1,000 live births and the population prevalence to be only 0.75 per 1,000 children aged two to nine years (Christianson et al., 2002; Venter et al., 1995). This difference suggests that 65 percent of the infants and children with Down syndrome had died by the age of two. Experience has shown that as effective care becomes available, population prevalence rises gradually to approximate birth prevalence (Christianson and Modell, 2004).

Rosemary Nambooze Nuwagabais the founder of the Angels's Centre for Childeren with Special Needs. Her second son was born with DS in Antwerp in Belgium. That was the inspiration for the centre funded with money from Belgium. In this article from the Daily Monitor part of her story is described:

Using a Shs14m grant from the City of Antwerp and some money from parents with children with disability in Belgium and their own savings, Nambooze and her husband started the centre in 2012. She says before starting she carried out intensive awareness campaigns in the community appealing to parents with special needs children.
“At first, I was discouraged because people in the community thought the centre would not stay for long.” But not one to give up without a fight, Nambooze started with 10 children. The aim was to create an enabling environment for such children to play.
“Most parents are compromised because house helps are impatient and cruel towards such children,” she adds.
Angel’s Centre is a platform for parents with different children to share information on how best our children can be loved and cared for, especially in areas such as concentration, toilet training and overcoming the stigma.
At Angel’s Centre, one is welcomed by a play compound with a few playthings for children.
Opposite the gate is the administration block which doubles as the reception. A medium noticeboard hangs on the wall that has pictures of some of the children.
There are eight trainers who deal with the children daily; teaching and supporting children in activities they can do without adult supervision.
Nambooze says: “I must admit that the journey has not been smooth. With all the support we provide these children, we lack financial aid yet we are dealing with vulnerable parents who cannot fully afford the costs and as such, paying the trainers and teachers is sometimes difficult.”
There is the issue of stereo-typing from the community. Some people in the community refer to special needs children as kasilu, kidomola, cabbage. This, Nambooze says demotivates both parents and the staff.
But that will not bog down Nambooze’s efforts of making a difference. “Supporting these children to become self-reliant and watching them become better motivates me to keep going on.”
She adds, that the centre’s success is measured by the children we have been able to help and the parents whose relationships have improved through the counselling we provide.”
The centre boasts of 60 children but there are others who attended to off-site.

The story of people with DS in Uganda is the all to familiar story of prejudice and stigma. This, most common of all intellectual handicaps, has a devastating effect on parents and family. Through proper education it is possible to overcome prejudice and stigma.

For more information about DS go to the Angels's Centre for Childeren with Special Needs.