‘My premature son was born with Down’s syndrome’

Claire Farrington, 42, has a threeyear-old son with Down’s syndrome and is expecting her second child. She lives with her partner andy in london.

Theo was born prematurely at 29 weeks, the size of a mobile phone. It was a traumatic birth and the diagnosis was totally unexpected. The NHS prenatal test I’d been given had an 80% accuracy rate that gave me a one in 279 chance of having a baby with Down’s syndrome. When we heard his diagnosis, we were devastated and afraid. Shockingly, I wished that the NHS tests had detected it and I’d done something about it. That’s completely unthinkable now.

Theo spent his first three months in the neonatal intensive care unit, with us trying to get our heads around a disability that terrified us. It was not what I had expected as a first-time mother – watching my baby survive, not thrive. Soon after, I started a blog and am now an advocate for Down’s syndrome, believing that we still live in a time rife with misunderstanding and fear.

Theo is a wonderful child who has as much right to be here as anyone else. He is making great progress – although still in nappies, he’s just learned to walk and is a bundle of love. Living with Down’s is not a burden. It is simply just a different life.

This second pregnancy, though, has been an anxious time – scans have been tearful and tense. Even more conflicting is how I feel about prenatal testing.

Since Theo was born, a non-invasive prenatal test has become available, which can accurately detect Down’s.

It has to be paid for in England. And

95% of women with a Down’s child go on to terminate those pregnancies.

With this new pregnancy I did have a private prenatal test, and it was one of the most difficult and emotional situations I’ve ever been in. There was an unspoken subtext of “you don’t want another baby with Down’s”. And the truth was, I didn’t. It was confusing and heartbreaking – I was testing for something my son is. Didn’t that make me a hypocrite? My son is nothing to fear, and you can have any child and there are no guarantees. Disability is a part of life. But even though we love Theo so much we couldn’t go through that two times.

As a result of more accurate prenatal testing, Theo could be the last generation of babies born with Down’s syndrome. But I believe parents need to hear more honest accounts of families just getting on with it. Theo has brought us back to what we should value: the individual, no matter what they are born with – and being grateful for being a family.

‘When we heard the diagnosis we were devastated and afraid’