A life worth living

When my son Tom was a day old and a paediatrician expressed concern that he may have Down syndrome, I was absolutely devastated. I felt my world fall apart and the bond of unconditional maternal love I had felt for my newborn was severed.

At the 20-week scan, the sonographer had advised that the baby may have talipes which could be indicative of a ‘chromosomal disorder’ such as Down syndrome. It was a Friday afternoon and the screening midwife had automatically booked me in for an amnio the following week. However, after previously suffering four miscarriages, I cancelled the amnio—the best decision I've ever made. Had we known, we may well have decided to terminate. I know now we'd have done so out of abject fear of the unknown, genuine ignorance and the expectation from many medical professionals and society that terminating was the best thing to do.

So, when Tom was just a day old, I found myself struggling to accept and love him. I discovered I was not quite the forward-thinking, easy-going, liberal, inclusive person I'd considered myself to be. I came to realise how outdated my views were, prejudiced by a fear of stigma because I'd been influenced by the negativity that permeates language, attitudes and information around Down syndrome.