Why I Fear Living in 'a World Without Down Syndrome'

As the mother of a child with Down syndrome, I’ve struggled to read several recent articles where the lives of people with Down syndrome are being quantified in terms of cold, hard cash.

These disturbing articles are all discussing the introduction of the NIPT – Non-Invasive Prenatal Tests to the U.K’s National Health Service. The Royal College of Obstetricians and Gynecologists (RCOG) are arguing for the introduction of a more expensive roll-out of the NIPT, partly on the grounds that it will save the NHS on the lifetime cost of caring for children with Down syndrome by detecting nearly 300 more children each year, of which a large number are projected to be aborted.

On October 5 at 9 p.m. U.K. time on BBC2, a documentary called “A World Without Down Syndrome?” is being aired for the first time. This program is presented by Sally Phillips, who has three lovely sons, the eldest of whom is Olly. Olly has Down syndrome. In the documentary, Sally investigates our national screening policy, specifically looking at the NIPT. She examines the ethical implications of the screening, and asks important questions about “what sort of world do we want to live in, and who do we want in it?”

Money makes the world go round, so the song goes… but does it? Who do we think we are to value someone’s worth based on something so crude? Without money, the world would still turn, and we could focus on the things that really matter, like our children.

I’m tired of having to justify my daughter’s right to life.

Because Evie has an extra chromosome, does that make her worth less than others? Are medical treatments to be denied to her because of her extra copy of chromosome 21? Should people have weighed up the financial cost to society of her life before deciding to proceed with their pregnancies?

A person is a person no matter how small, no matter what their abilities. We are all people. Black or white, rich or poor, tall or short, fat or thin. Extra chromosomes or not. What does it really matter? We are who we are.

I’m not naive enough to think we can survive without money. But I will never judge the value of a person by  their bank balance or their likely cost on the public purse.

Evie has Down syndrome, an underactive thyroid and sensory processing disorder. She needs daily medicines. She has speech therapy, occupational therapy and physiotherapy. Yes, there is an associated cost with this. There is an associated cost with her having 1:1 support at school.

Let’s look at her sister’s economic cost… She has more daily medicines than Evie. She has had far more hospital stays than Evie. Yet she is chromosomally “perfect.”

Think of others with “perfect” chromosomes… they could carry a cancer gene, or develop autism or dementia. They could have sight or hearing conditions. They could get run over by a bus tomorrow and require years of intensive therapies.

So if we were able to prenatally diagnose these issues, would we quantify their life in terms of cash?

I see the phrase “charity begins at home” being spouted out on social media. Yet most people misinterpret this or ignore its true meaning. It actually teaches that we (ourselves and our families) should sacrifice for the benefit of others. “Charity begins at home is the voice of the world: Yet is every man his greatest enemy.” — Sir Thomas Browne; Religi Medici 1642.

Together we are stronger. Variety teaches compassion and love. Life isn’t all about what you get out of it, it’s what you give back, too.

If we were all the same, life would be terribly grey. Now I have nothing against grey per se, but there’s nothing as beautiful as a splash of color. Nature shows us that in so many ways… in our surroundings and in our children.

A version of this story originally appeared on It’s All About Evie.

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