Twins, one healthy, one with Down’s, share bond which shapes their lives for the better

The two-year-olds have the same stripy black and white tops, identical denim dungarees and cute colourful necklaces.

Although they may not look completely identical, there is no doubting they are two peas in a pod.

Yet there is one huge difference to separate one from the other. For though they were born seconds apart, a “one in a million” quirk of nature means Ruby – unlike her twin sister Darby – has Down’s syndrome.

But while juggling the mayhem of twins might spell double trouble for many – even without the added pressure of caring for a disabled child – according to parents Tracii and Neil Smith, their exceptional toddlers have developed an amazing bond, and it’s one that is helping to shape both their lives for the better.

“It’s definitely an advantage that Ruby has Darby,” nods full-time mum Tracii. “Ruby has come on leaps and bounds because of Darby. And Darby is the person she is because of Ruby. They actually work together and bring each other along.”

It’s a unique bond that has now been captured in a series of delightful images, which form part of a major new exhibition and book aimed at breaking down the myths and stigma surrounding Down’s syndrome. Unveiled today at Summerhall, the new arts hub at the former Dick Vet, and coinciding with Down’s Syndrome Awareness Week, it illustrates the everyday lives of families affected by the condition, accompanied by their own inspiring words and thoughts.

It’s a delightful new phase in what could have been a difficult journey for the Smith family. For when Tracii first learned that one of her twins was almost certainly likely to be born with Down’s syndrome, there was the added fear that she might not even survive at all.

“When I went for my first scan and they said I was having twins, my first thought was ‘Oh my God’, and my next... ‘well, better get used to it’,” laughs Tracii. “It was quite early, so three weeks later I went for another scan.”

Having just got used to the idea of carrying twins, Tracii was then hit by the worrying news that a detailed scan had revealed problems with one of the babies. Too much fluid surrounding the developing baby meant it might never grow, and the anxious parents were given a harrowing warning to prepare themselves for what might be a sad outcome to their longed-for pregnancy.

So having been braced for the worst, the couple were delighted at their next scan, which revealed both babies were indeed growing. Even the warning that it appeared that one of the babies had a 50-50 chance of being born with Down’s syndrome could not dent their joy.

And when doctors offered them the option of a highly invasive amniocentesis test to confirm those suspicions, the couple immediately opted against it. “We didn’t see the point,” shrugs Tracii, 40. “I wouldn’t have had a termination – I couldn’t terminate one baby and keep the other. And the amniocentesis meant risking them both. We were happy to just go ahead with the pregnancy as it was, and we stopped even thinking about Down’s syndrome.

“After that, everything was okay,” she adds. “A heart scan showed that Ruby had a heart problem and that she’d need open heart surgery at three months old, but that was something we could deal with later.”

The girls were delivered at 37 weeks after Tracii showed signs of developing potentially fatal pregnancy condition pre-eclampsia, Darby at 5lb 4oz and her twin sister Ruby weighing 5lb 1oz. “I just looked at Neil and said ‘are they okay?’ and he nodded back. I knew by looking at him that Ruby had Down’s  syndrome, but it was really fine,” she adds.

Ruby underwent open heart surgery to repair a hole in her heart when she was only three months old, but complications meant the operation, which should have taken eight hours, lasted ten. And like many babies with Down’s syndrome, low muscle tone made it hard for her to feed, which meant Tracii and Neil, who live at St Claire Road, Leith, had to learn how to tube-feed their daughter – a fiddly business when another hungry twin was also looking for attention.

“To be honest, Ruby has been brilliant,” adds Tracii. “You just get on with it. It never stopped me taking the girls out, and if I had to tube-feed Ruby in a cafe, I’d just do it and turn a blind eye to anyone looking. Most people seemed pleased I was doing it in public and not hiding away at home. The feedback from people who see the girls is positive.”

Above all, Tracii loves seeing Darby “teach” her sister new skills. “Darby is inquisitive and learns to do new things naturally, whereas Ruby has to be taught,” she says. “I can see Darby doing something and Ruby then trying to do it too.

“And it works both ways. I do ‘sign along’ with Ruby to help her communicate and Darby has learned to do it too, she copies what I do with her sister.”

Neil, 30, who recently appeared in a Down’s Syndrome Scotland booklet for new parents, agrees the girls are perfect just as they are. “Ruby is her own person and seeing her reach her milestones is as rewarding as Darby’s, no matter if she reaches them later. Seeing her determination to do what she sees her sister doing and how she’s developed is a joy.

“I can’t think of Ruby being any other way.”

For more information about the work of Down’s Syndrome Scotland, go to www.dsscotland.org.uk or call 0131- 313 4225.

A fundraising tea party with raffles and games in aid of Down’s Syndrome Scotland is being held tomorrow at The Halls, 6 Henderson Street, Leith from 12.30 to 3.30pm.

Random condition

APPROXIMATELY one in every 1000 babies in Scotland is born with Down’s syndrome, and around 750 babies a year in the UK are affected.

The condition occurs randomly at the point of conception and affects males and females alike. It is rarely hereditary and nothing the parents did before or during pregnancy can have caused it.

It is caused by an extra copy of chromosome 21 inside some or all cells. People with Down’s syndrome have three copies of chromosome 21 rather than the usual two. The result affects physical and intellectual features – all people with Down’s syndrome have some form of learning difficulty and tend to be shorter than average with a flat facial profile and eyes slant upwards.

Although risks of having a baby with Down’s syndrome increases with age, 80 per cent of babies with it are born to women under 35.

Almost half affected have heart defects, some of which can be treated. Many also have stomach problems, which can make eating difficult and increases the risk of problems such as constipation, and disorders of the thyroid gland. Other physical problems include cataracts, hearing and sight problems, and a susceptibility to infections.

Life expectancy for someone with Down’s syndrome has increased significantly thanks to improved support and health care.