You can't have missed it. The story of little baby Gammy, supposedly left by his parents in Thailand with his surrogate mother, while his twin sister was taken home to Australia. A trust fund was started for his wellbeing. A fund that most children with health needs in developing countries wouldn’t have access to. In countries where even education would be denied them.
My heart sank so deeply into my shoes at so very many elements of this story. But the focus on the world’s horror at this little man being ‘abandoned’ is what set my mind racing.
I watched the social media net unfurl, with words such as ‘scum’, ‘disgusting’, vile’, and ‘inhuman’ bandied about on social media, aimed at all parties concerned. The row continues, with this one and that denying this action and that, and the parents saying they didn't know Gammy existed at all, but whatever I felt about the baby not having his significant needs met by those who brought him into the world, and the rights and wrongs of paid surrogacy, I couldn’t help but wonder at the media fury against this couple. There was something slightly hypocritical about it.
Sadly we live in a society where the words ‘Down’s syndrome’ strike fear into the hearts of pregnant women, where the words of our trusted medical professionals are all too often ‘bad news’, ‘risk’, ‘I’m sorry’, ‘suffer from’, ‘afflicted by’.
Somehow society has painted a terrible lie of our children, and instead of the support these prospective parents needed, it may have been that this couple felt they weren’t up to the task of being special needs parents. The decision it is claimed they made, at a routine scan, to ask the surrogate mother to have an abortion was the same decision that 92% of women who are given a diagnosis of Down’s syndrome make, albeit antenatally, often because that is what is advised. That is where the deeper outrage should begin, the outrage of eugenics.
The decision they made was much like that of the sister of a friend of an acquaintance who felt she couldn’t cope and gave her baby with Down’s syndrome up for adoption, a decision that might have been avoided had she felt more supported, and had someone encouraged her to see her baby simply as just a new baby and not a set of symptoms or predictions for his future. It is a decision I know she has lived to regret. This is a sadness that happens the world over, simply because we have no idea how wonderful and unique every individual with Down’s syndrome is and just what can be achieved in their lives.
And the media with their unthinking headlines that hail new 'sensitive' early screening for Down’s syndrome as ‘safer’ and ‘a step forward’. But there is no cure for Down’s syndrome, neither should there be, so early detection is only useful if parents wish to prepare for their child, or if eradication is the name of a larger game plan.
Looking at our chocolate-scoffing, sister-teasing, Frozen aficionado daughter who swims and reads and draws and writes and is a true chatterbox and a light in the heart of our community, I cannot for the life of me see why anyone would want to avoid a child like her in their lives. She is fun and cheeky and bright and clever and wise and naughty, just like any other child. She lives life to the full every single day.
So why do we recoil from seeing the world through different eyes? Why do we resist slowing down and living in the moment alongside these children? Why do we fear anything other than cookie cutter perfection? Of course more and more women are choosing not to screen because they see the natural reality, but Gammy’s parents, if they knew of his existence, would have been ignorant to the true picture, as indeed I once was.
Yes, there are challenges along the way, as there are with any child. We have made changes in our lives, very small ones, to accommodate our daughter’s different learning style. We’ve had the worry of illnesses and keyhole heart surgery, but most of the hurdles she will face are put in place by society and outdated attitudes, and those we are changing day on day, like ripples in a pond.
And how do those with Down’s syndrome feel reading about Gammy’s story, for yes, they read newspapers too, just like you and me. The underlying subtext of the actions of those who step away from a baby with the condition might just as well shout out loud that they view them as worth just a little bit less.
So let’s create new social stories about individuals with Down’s syndrome, proudly portraying just what everyone is capable of achieving when limits are not set for them, before they have had a chance to prove their worth. We are all different yet alike after all.
Maybe one day, parents of much wanted offspring will see children like Gammy for what he is, an incredible asset to his family and community. For he will contribute just as much to the mix as anyone else. We have certainly learnt so very much from our girls, and am a much better person since becoming the mum to a child with Down’s syndrome. I am one of the lucky ones. And perhaps Gammy and his new Mum are the lucky ones too.
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
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