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Belfast Live
Belfast Live
Entertainment
Jane Corscadden

Co Down girl defying all odds nine years on from heart surgery

A young girl born with Down's syndrome and a heart condition is defying all odds nine years after undergoing surgery.

Nine-year-old Lucie, from Waringstown in Co Down, travelled to London six months after she was born in 2013 to undergo heart surgery. Just days after she was born, she was diagnosed with an atrioventricular septal defect, meaning there was a hole between the chambers of the left and right sides of her heart.

Now on a two year review with her cardiac need, Lucie's mum, Zoe McCullough, described the youngster as being "like Teflon." She began walking at 18 months old, shouldn't need any further surgery, and the leakage between the the chambers in her heart is set to reduce as she gets older.

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"Lucie is probably one of the success stories. It's daunting when you find out your child has a heart condition," Zoe told Belfast Live.

"Something like hers is fixable when others maybe aren't, however I think it's one of the crowning glories of our NHS we can access that without any stress and the cardiac team in Belfast are incredible, I couldn't praise them enough, between them and the Children's Heartbeat Trust.

"When she was born she had a diagnosis of down's syndrome. They sent us to the Royal for her cardiac work up, which is common enough when a child has down's syndrome because the two conditions are quite conducive, you would often get a heart condition alongside downs syndrome. It's a common secondary diagnosis. We got to the Royal when she was two days old, and she had an ECG and an echo done.

"We were given a positive diagnosis for her heart condition which was an AVSD, an atrioventricular septal defect. She had an issue with the chambers of her heart, it had a hole in it.

"Sometimes it can fix itself, but hers was too severe so it would need surgery. It all turned into a bit of a whirlwind. That was in January, and we took her to London in June for surgery.

"She had flow going between the chambers of her heart, when you shouldn't. Two months before her surgery she wasn't even 4 kilos, she was very small."

The nine-year-old is now very active, after taking up horse riding and becoming a frequent swimmer.

Zoe has two other children, Archie, 7, and Jay, 11. Like Lucie, Jay also has down's syndrome and a heart condition, however his cardiac need is stronger than Lucie's.

"These two are so different. Lucie will probably immigrate, she's one of those children. You know she'll go somewhere. Where Jay will probably be with us forever," Zoe explained.

"They're very different which is nice, but it's very daunting. Jay is off now for eight weeks, and his cardiac need is a lot more complex than hers, he tires very easily.

"But Lucie does not ever, I don't know where we found her - I think they put in extra batteries when they had her because she is crackers. We laugh all the time because she's just started horse riding recently and she loves it, and she would be in the pool for hours if you let her.

"We say all the time if you look at Lucie you wouldn't think she has a cardiac need, because she's strong and has all those non-stereotypical things you would expect. She does have poor tone, but she has the capacity to work on that. She's done so well, even with school she's done so well. She's going into P5 this year in a mainstream school.

"We try and do what we can do within reason, if it's too much we know. Lucie's cardiac need is easier to negate, Jay's is a lot more difficult. He will continue to have surgery, he needs a new valve at some point. His is never ending, he needs the pacemaker replaced, he has had five surgeries already, he will continue to have cardiac need forever."

Jay and Lucie are both represented by a modelling agency, Rising Talent, who represent people with disabilities.

Zoe said it's "amazing" to see what the youngsters have been able to accomplish already despite their cardiac need.

She added: "They're represented by an agency, one of the only ones in Northern Ireland who represent people with disabilities. Lucie was in a campaign for the Department for Education, was on billboards around Belfast.

"Jay is non-verbal so he can model because he doesn't need to talk - he just needs to sit there and be cute. They don't need to be able to read lines or scripts, it is actually inclusive for the best part. The girls who run the agency are brilliant, they're so inclusive."

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