Morris JK, Springlett A. The National Down Syndrome Cytogenetic Register for England and Wales: 2013 annual report. Queen Mary University of London: Barts and The London School of Medicine and Dentistry. 2014;

Positive About Down Syndrome. Sharing the news: the maternity experience of parents of a baby with Down syndrome. 2019. (accessed 1 October 2019)

Skotko BG, Levine SP, Goldstein R. Having a son or daughter with Down syndrome: perspectives from mothers and fathers. American Journal of Medical Genetics. 2011; 155:(10)2335-2347

A life worth living

02 January 2020
Volume 28 · Issue 1
 Tom on the beach in the Seychelles
Tom on the beach in the Seychelles


Sharing the news about Down syndrome: Nicola Enoch discusses the impact attitudes have on parents

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 I came to realise how outdated my views were, prejudiced by a fear of stigma because I'd been influenced by the negativity that permeates language, attitudes and information around Down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.

Register now to continue reading

Thank you for visiting British Journal of Midwifery and reading some of our peer-reviewed resources for midwives. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to our clinical or professional articles

  • New content and clinical newsletter updates each month