A World Without Down Syndrome

Photo credit: Reem Gaafar
October is Down Syndrome Awareness month, and around this time last year came Sally Phillip’s documentary film A World Without Down's Syndrome that asked the question: what would the world be like if Down’s syndrome was eliminated? Some countries are well on the way to answer that question: Iceland’s rigorous screening and abortion techniques have brought their incidence down to zero cases in the last 5 years – 100% of babies diagnosed in utero with Down’s are aborted. Countries following in track include Denmark, which believes it will have ‘eradicated’ the condition in the next 10 years.

The article reporting these statistics describe the action as a holocaust of Down Syndrome babies.
The issue of choice – choice to abort or to keep – is a complicated and controversial one. I once reviewed the Lebenese film Ghadi which looked at a family who faced this same choice when their unborn child was diagnosed with Down’s, and how their life turned out afterwards. They decided to keep the child, after a wise old man advised them to first give the child a name, so that he would become a person to them, and then decide if they would abort their child or not. As I read through miles of research for the review, I was quite confused about how this issue is perceived by different people, as well as their justifications for their decisions. There were just so many opinions and justifications for opinions, and it was clear that many interlacing and conflicting factors came into this decision.

Having a child with any degree of disability is a difficult experience, and one that is judged in all sorts of different ways by those on the other side of life. It is also something that different people react to in very different ways. Children born with Down Syndrome have a multitude of conditions and complications that vary widely from child to child, but in the majority of cases involve life threatening heart defects, gastrointestinal problems, increased risk of leukemia and dementia, obesity, as well as what they are most known for: mental retardation. This means that the child will need constant and close care from the get go, which is something not everyone understands and appreciates, and certainly many people simply can’t afford. On the other hand, children (and adults) with Down’s are known to have the sweetest temperaments, and are rarely difficult to manage. They are generally happy and satisfied, and their condition in many cases is a reason that brings families together.

Speaking with different people who have experienced life with a child with Down’s, I received very different answers but one conclusion: that it wasn’t easy. For some, the pain the family and the child went through was almost unbearable, enough to wish this child was never born. They need constant special attention, and their parents worry continuously about how this vulnerable child will manage in the world after they die. Families have been uprooted and moved around trying to find the best environment and schools for the child – at the expense of the rest of the children. And when the child grows older and in the rare case starts to develop behavioural problems, short tempers and tantrums, they become more of a burden to the family than ever before.
For people with this perspective, abortion – if it were a valid religious and legal choice – would be the option to go with.

On the other hand, some people who have been through the same experience have lived it differently. Elrayah was born to a young couple with no particular risk factors. As many children with Down’s, he suffered from several congenital problems, mostly heart problems which required surgical intervention and expensive treatment and follow up. His parents were regular middle class Sudanese, his father working for several years with a large charity group that helps in orphanages and food banks. After getting over the initial shock, the parents didn’t waste a moment of their time. In that strange way that God provides for those in need, the family managed to scrape together enough money with the help of friends and family to get Elrayah the medical attention he needed, and flew him to India for open heart surgery at a very young age. The surgery was a success – but just the first step in a long, long journey to treatment.

One thing Elrayah’s father noted was that every time they would seek medical help for various issues such as nasal breathing or dental problems, their child would be dismissed as ‘just a result of Down’s syndrome and therefore untreatable’, without a second thought. Through their persistence however, they managed to get him the treatment he needed, but faced resistance from the very same medical professionals who were supposed to be providing this treatment. This experience taught them how important it is that families and professionals alike understand that early intervention and close care is a major game-changer in the life of these children, and therefore in the life of their families.
To many people in Sudan, Down’s syndrome is just another disability, and children with disabilities are apparently lost causes not worthy of anyone’s time or effort. The easiest thing to do is it to dismiss their complications as expected, and leave them on their own. Through their experience with their child’s condition, Elrayah’s family became advocates for Down syndrome in the community, urging those families with the same condition to seek help for their children as early as possible, not to ignore their needs, and not to give in to the society that tells them their children are as good as dead so why bother. As for the effect having a child with Down’s has had on their own relationship, it has brought them closer together. Elrayah’s father used to work crazy hours and come home late at night, but since the birth of this child he has dedicated all he has to him and his family. Elrayah has been a source of joy and a blessing to them, a gift from God. And having worked with orphans and abandoned children for many years, his father knows that there are destinies much worse for children than a somewhat simple – and manageable – condition such as Down’s.

So the question of what the world would be like without Down’s syndrome remains standing. But another question begs an answer: do we really need a world without Down’s syndrome?

Special thanks to Tagreed Abdin and Lena El Sheikh for helping with this article.