Last week I got round to watching a programme I’d recorded – ‘A World Without Down’s Syndrome?’ In it Sally Phillips, who herself has a child with Down’s Syndrome, raises concerns that a new highly accurate screening test will lead to an increase in the rate of abortions of those identified with Down’s (which is already at 90%).
It was an interesting programme and one which raises lots of questions about choice and the knowledge that can inform that choice. For myself, as an older mother I was well aware of the ‘risk’ in my own pregnancies. Having had contact with the Down’s community previously I think I was less scared about this prospect than some other mums would be and refused the testing that was already available. Partly because I knew the limitations of the test itself and also because I would not have aborted anyway.
Watching the programme though, I couldn’t help but think of our situation now. I was prepared to deal with a Down’s diagnosis at birth, but to be hit with the bombshell of MPS when he was three years old was never on my radar. So if I’d been told when pregnant that my child would have this progressive and life-limiting condition what would I have done?
I don’t think I could have faced the prospect of heartbreak and devastation, the weekly treatments, the uncertainty of this diagnosis. How could I put myself and our family through that, let alone the child itself who would have to become more familiar with operations and needles and blood pressure cuffs than I would ever want to?
But of course we never had that choice to make, and I am very glad I didn’t have to. If I had, and found out now that gene therapy could be available in Pudding’s lifetime, I don’t know how I would feel.
Even taking away that prospect, I couldn’t contemplate life without him, knowing now how much I love this bundle of trouble. Last year I wrote that I would change his Hunter’ Syndrome in an instant. That’s still true on a medical level – if I could save him from the needles and us from the worry, I certainly would.
But now I do have more understanding of the other SEN parents who say they wouldn’t change their child for the world. Without Hunter’s, he wouldn’t be the boy who makes his TA’s face shine with pride when she shows me his latest ‘drawing’. He wouldn’t be the boy who in a few short weeks has made himself known and loved throughout the school. He wouldn’t be the same boy who makes me melt with love every time I look at him. He simply wouldn’t be my Pudding.
Potentially he could perhaps be a more ‘useful’ member of society. But then he could also have the potential to bully other children, drive dangerously, become addicted to drugs, or many other harmful things.
As medical science moves on apace, soon (even now) they will be able to screen for all sorts of things, from genetic markers for disease through to intelligence. What is right? Where do we draw the line? And who gets to decide?
I don’t have the answers myself. All I do know is that if pregnant me could see current me she would probably still be terrified about the prospect of MPS and all the troubles that it brings. But she would also see the smiles, and the hugs, and the kisses. And the overwhelming love. And I think that would make all the difference.