World Down Syndrome Day, 21 March 2020 is an awakening and loud call to all the parents, families of the children with Down syndrome, to the society they live and health personnel at large by the United Nations, to raise awareness. It also seeks commitment from one and all for not sparing any effort to address the needs of the children with Down’s syndrome at all levels to enable them to achieve their fullest potential as regards the quality of life and productivity. It aims to help them assimilate with society as empowered, proud and contributing members, full of self-esteem and confidence.
This year’s theme is “We Decide”. This is in support of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which recognises effective and meaningful participation in societies as a core human right.
Down Syndrome is one of the commonest chromosomal disorders the world over. The incidence is 1 in 1000.
These children have multiple disabilities. However, a lot can be done for them through time and continuing interventions to mitigate their disabilities and facilitation of achievements to their fullest potential by simple interventions. Many of these are readily available with the final aim of making them useful and productive members of the society
Early interventions by a multidisciplinary team comprising of a physiotherapist, occupational therapist, otorhinolaryngology, ophthalmologist and speech therapist can go a long way in enabling these children to achieve their potential and to integrate and contribute to their communities. Down syndrome children have disabilities of multiple organ systems such as the heart, gastrointestinal and genitourinary systems.
These should be addressed as early as possible by surgical intervention. Early stimulation therapy with the involvement of the parents is of immense benefit for the improvement of their cognitive and social development. This intervention is most effective if provided in the early years.
Having a child in a family with Down Syndrome impacts the entire family. As such, there has been a shift in the approach of the health care system which has moved towards providing for the needs of the whole family through initiatives such as Individualised Family Service Plans (IFSPs) which outlines the support required by the whole family.
It has been recognised that the parents are best placed to facilitate their child’s language and speech development as they can maximise communication opportunities in all situations. Such ongoing interventions with the involvement of the family members can change the child’s potential outcomes at an early and malleable stage of development.
Counselling of the parents is also of paramount importance. Couples should be advised to complete their families at a young age as the chances of having a baby with Down Syndrome increases exponentially with the advancing age of the mother. A comprehensive genetic workup of the child and both the parents will enable the clinician to identify the specific chromosomal error that caused the Down Syndrome.
Counselling based on proper scientific evidence will enable the family to make informed decisions. Parents, the community and the health personnel can optimise the lives of these children through concerted, coordinated and synchronised efforts. All that is needed is that “We decide” and take a pledge to do all that we can do for these specially challenged children.
Let us all come together and decide to do whatever it takes to create a positive, healthier and productive life for these children. We must choose to do everything possible for these children and resolve not to become complacent in executing what “We Decide”.