In the build up to Sally Philips wonderful and thought provoking documentary that asked “A World without Down’s syndrome” and explored the ethics and implications of the introduction of new non invasive testing for Down’s syndrome, I was asked to write a piece for The Daily Express – i stared at my computer for three hours not knowing where to start and fit my thoughts into 850 words. This is where I ended up…
It was a small, musty room where the news was delivered to us that Seb, who was five days old, had Down’s Syndrome. It was the sort of airless room you know is kept free to deliver bad news. The paediatrician, ironically called Dr Downie, sharply exited to allow us some time to ‘take it all in’ and I vividly remember how claustrophobic I felt, the sick feeling in my stomach and the hot flush in my cheeks. I wanted to run, but we were captive.
12 weeks into my pregnancy I paid for a nuchal scan. Back then, in 2007, the test, which tells a woman the chances of her having a baby with Down’s, was only available to women over the age of 35. At 34 I felt compelled to pay for the test.
The results came back low “risk” (as the NHS likes to refer) and I merrily ticked it off my list of things to worry about. I remember skipping past the whole section about Down’s syndrome in my pregnancy books and whispering to a friend “I couldn’t deal with that” – something I am hugely ashamed of now.
The diagnosis was a huge shock. I imagined a lifetime of “difference”, exclusion and feeling second rate. I assumed the searing pain and devastation I felt would stay with me forever, but bit by bit the hurt began to lift as I fell in love with my baby. He smiled, he laughed, he cried. He walked, he talked and he did everything you would expect a baby to do. Slowly his diagnosis slipped from the fore and I stopped seeing “Down’s syndrome”, and just saw my son.
Seb, at 8 years old, is bright and witty, he reads and writes, and he is ridiculously sporty. He goes to a mainstream school and his teacher believes he is “the most popular kid in his class, if not the whole school”. His charming personality and deep empathy levels, never fail to make an impact and I have seen the hardest of people break into a smile when faced with his beaming face and bright blue eyes. I am hugely proud of him and I can’t bear to think how our story may have ended, or never really begun, had we known he had Down’s syndrome when I was pregnant – and uninformed.
So why was I so scared of Down’s syndrome? Why do over 90% of parents who receive a positive pre-natal diagnosis decide to terminate, yet almost all parents who have a child with Down’s say that they wouldn’t change a thing?
When I was growing up I never knew anyone with Down’s syndrome, or any disability. The emphasis placed on testing reinforced the idea that it was something to fear. I based my future on the past and a time when people with disabilities were segregated. Not seen, or heard. Labelled and not included. A sub-race. It is both unsurprising and tragic that historically when people with Down’s syndrome were not nurtured or encouraged, and did not have access to education or adequate healthcare, opportunities to reach full their potential were limited, if at all.
But take a look at the next generation. The children growing up with Seb don’t see a label. They don’t even know Seb has one. They have no preconceptions of what Down’s syndrome is or what it historically meant. Seb is not limited by their low expectations. They know he needs a little help with some things, but that is just a small part of Seb. He is defined by his personality, his likes and dislikes, and not his condition. If I asked his friends to describe him they would say “he is good at football”, “he wears glasses”, “he is funny”, “he is a Chelsea fan”. Ask the parents and they would most likely say “he is the boy with Down’s syndrome in year 3”
Just as we sit on the cusp of really making positive strides with inclusion, and people with Down’s syndrome finally being valued as equals, scientists have developed a new, more accurate, non-invasive pre-natal test for Down’s syndrome, among other chromosome conditions. It is predicted that the termination rate will increase to almost 100%, with some Scandinavian countries already working towards eradicating Down’s syndrome altogether.
I could not imagine our family without Seb. He has enriched my world beyond measure, changed my whole outlook on life for the better and every single day I am thankful that he is mine and that he is here.
There is no doubt that there is a place for a new non-invasive test, but it needs to be administered responsibly alongside balanced information and the whole picture, not in an airless room with the tired notes from an outdated medical text book about Down’s syndrome and an “I’m sorry”. The test in isolation is pure science. It is an absolute, black and white answer. It is missing colour. Our life is full of depth and dimension, brightness and texture, and the richness of diversity.
It’s full of love. And science can’t test for that.
Full article is here:
I watched this programme and initially felt it lop-sided. By the end though I could see her point that you have the experience of raising a child who has DS, or any disability for that matter, and this gives you the balance that a mother with a fresh diagnosis can’t possibly have.
Your blog and several others go a long way toward providing the whole picture.
Assuming that 100% of Mums will terminate with a DS diagnosis, which is what the medical world is doing, seems to completely give up on the idea that folk can be educated about the joy and love living with and raising a child with a condition entails.
Hi Caroline, my name’s Zoe Ferguson I work at the Australian Broadcasting Corporation in Sydney – I research for the news and current affairs TV program Lateline and I’d like to speak with you about your family and Seb. I’d love to invite you on our program tomorrow Tuesday (November 22nd) to share your story. What is the best direct email address for you, as I’d appreciate a private conversation if possible. Thanks in advance. Speak to you soon.
Hi Zoe, thanks for the contact, you can get me at firstname.lastname@example.org and I can mail you my number. All the best, Caroline