Down’s Syndrome testing could be the end of amazing children as my boy Ted

Angie Emrys-Jones and Ted Emrys-Jones

Angie Emrys-Jones and Ted Emrys-Jones

Doctors asked if she’d had Down’s Syndrome screening and before she knew it, Angie and husband Jeremy were overloaded with information about what to expect for young Ted. Mum Angie Emrys-Jones, 40, noticed something wrong when her second child was born.

Here she explains why her wariness around pre-natal screening.

As soon as my second child, Ted, was born, it was clear something wasn’t as expected. He was blue, floppy and unresponsive.

Doctors asked me if I’d had Down’s Syndrome screening. I noticed there was murmuring and sideways glancing.

It was very shocking. My husband, Jeremy, was in complete denial and switched to autopilot.

Ted was very unwell and was taken to special care.

When we went to see him, I could tell he had Down’s. It didn’t matter to me, but what was hard to deal with was the finality of it.

It was a done deal, a life-long condition.

When Ted was formally diagnosed with a blood test, the consultant didn’t even stop walking to tell me the news.

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We were given lots of pamphlets. Our baby was barely a day old and we were being told we could expect him to have early-onset dementia if he made it into his forties.

There was lots of bleak ­information which didn’t tell us about the child, just about the condition.

I’d declined the screening tests in my first two pregnancies – I didn’t think it mattered as I would love my baby whatever.

But when you are given a diagnosis, your mind takes you to some very dark places.

We had to work our way through that and realise he was just a little baby, he wasn’t a diagnosis.

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Things can seem bleak but the sun still comes up and the world keeps revolving.

For me, the news came at the right time. If I’d found out during pregnancy, I’d have worried myself stupid.

I don’t know what decision I’d have made. I’m not naive enough to say I would have been fine.

Sally Phillips raises concerns able Down Syndrome tests on BBC Radio
Sally Phillips recently questioned whether there should be any screening for the condition

Having him there in my arms, it was easy. Things might have been different if I was 12 weeks pregnant and we hadn’t bonded.

Ted was in hospital for four weeks then needed a lot of care at home. He was on oxygen for 18 months and tube-fed for a further year.

We joined a support group in Cornwall and immersed ourselves in this new world.

We realised we had been given an amazing little boy who is funny and sweet and showed us patience and kindness. There was no need to grieve for anything.

Ted is nine now and has given me far more than he has ever taken.

I worry that the plans to introduce non-invasive pre-natal testing (NIPT) will lead to more babies with Down’s Syndrome being terminated.

Sally Phillips raises concerns on screening for Down's Syndrome

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I am not against screening, but I worry parents do not get balanced information, so they may make an ill-informed choice they have to live with forever.

My son is perfect and the idea someone wouldn’t want a child like Ted does hurt.

When I was pregnant with my third child – Sylvie, now three – I had a CVS (chorionic villus sampling) test because I wanted to know what was coming.

But there was never any question about whether I would keep her. Why does Down’s Syndrome need to be detected?

If someone came to us with a treatment which could get rid of it, I wouldn’t let them. We wouldn’t let Ted be any different.

Earlier this month actress Sally Phillips, who has a son with Down’s, spoke on Radio 4’s Today programme about whether we should even be screening for it.

She said that if people with Down’s were considered a race, it would be completely unacceptable.

As far as I know, there has been no consultation with people with Down’s about screening.

We have to ask where will it end? If we screen out Down’s, will we start looking at other disabilities?

For children with Down’s Syndrome today, the sky is the limit. Ted has appeared on CBeebies and had a flying lesson. I’ve learnt not to put limits on him as he always proves me wrong.