Reimagining a diagnosis of Down’s syndrome

New parents of children born with Down syndrome are typically given a very dire outlook on their child’s future. That is, if they haven’t been counseled months earlier to have an abortion and terminate that child’s life. Some are surprised with the news at the birth of their baby, all scans having been normal throughout the pregnancy. Some are aware of the chance that baby will have Down syndrome and are a little more prepared although, I don’t think any amount of education or discussion beforehand can completely prepare you to learn your baby has this diagnosis.

Babies can be born severely affected needing surgery almost immediately; they can be born with other issues related or unrelated to the Down’s syndrome diagnosis. Or they can appear to not have any issues or diagnosis only to be diagnosed weeks or months later when parents seek medical attention for one reason or another.

Since Down’s syndrome affects each individual differently, no one can accurately predict the potential of any one person nor should they try. This diagnosis, like any other, is only one piece that makes up the whole. There are so many other factors to consider such as ethnicity, country of origin, family make up, social-economic status, access to services and the community’s attitude toward the family and the child. This last one is huge and should not be minimized. The reception of family and friends and the community at large to a baby being born with Down syndrome impacts the health of the family and the future of the child.

If the child is welcomed and celebrated and if the parents are congratulated and encouraged, the atmosphere surrounding that child will be a much healthier one in which to thrive. If, on the other hand, the health care team, family, friends and community instead grieve with the family, offer unsolicited advice, ignore the baby’s arrival or otherwise surround that child and family with a bleak, depressive atmosphere, his or her future potential is stunted from the beginning.

The future for people with Down syndrome looks very different now than it did ten, twenty or thirty years ago. Educational and employment opportunities abound. Services are much more accessible, targeted and effective. People with Down syndrome are living longer and are finding meaningful employment in many sectors. Of course, this isn’t always the case and there are also many people with Down syndrome who have multiple diagnoses, who do not have the access to services others do, and who are still sadly ignored and marginalized by their communities. Even so, ambassadors for the diagnosis around the world are working to change this so that all people diagnosed with Down syndrome can live out their own individual potential.