Wednesday 24 January 2018

Little boy who has fought the odds his whole life

Born with Down syndrome and serious heart problems, brave Conor is ready to be a big brother, writes Lisa Jewell

Cronia McKay with her husband Tony, Conor and seven-week-old baby Beau.
Cronia McKay with her husband Tony, Conor and seven-week-old baby Beau.

Lisa Jewell

FOUR-YEAR-OLD Conor McKay is trying to get his mum's attention.

"Raa raa," he says and his mum Cronia knows he wants to watch his favourite TV show 'Raa Raa the Noisy Lion'.

He sits following the adventures on the screen and makes noises as he interacts with the colourful characters.

It's a typical scene in lots of houses across Ireland. Except in this case, it's a miracle that Conor is even here.

Diagnosed with a serious heart condition and Down syndrome four weeks before he was born, he underwent 11 surgeries before he was two-and-a-half.

His first surgery was at just two days old and when he had open-heart surgery at four months old, he was given a 5pc chance of making it through.

Without the surgery, he had virtually no chance of surviving.

He has defied the odds to make it and just a few weeks ago, he became a big brother to baby Beau.

"He's very clued in to how you're feeling and when Beau is crying, he gets upset as well and comes over to rub his cheek," says mum Cronia.

"There's been absolutely no jealousy whatsoever. We reckon they'll be good pals as time goes on.

"And it's been very good for Conor in terms of helping him become more independent."

Having a five-week-old baby in the house, Cronia and her husband Tony aren't getting a huge amount of sleep. But they say they're well used to it as over the last four years, with Conor's medical issues, they've gotten by on very little shuteye.

Tony (41) and Cronia (39) met at the wedding of Cronia's brother. Tony was a friend of her brother's from when they studied together at university in Glasgow.

It was not long before Tony moved from his native Glasgow over to Dublin to be with Cronia.

The couple had been married for almost five years when they conceived their first child Saoirse in 2008. Sadly Saoirse was delivered stillborn at 34 weeks.

"We found out at the 20 week scan that she had absolutely no chance of making it as the brain and some of the other organs hadn't developed," says Cronia.

About 14 months later, Cronia was coming up to the 34 week stage with her second baby and was understandably feeling a bit jittery.

But the scans up until then had been fine and Cronia had felt well throughout her pregnancy.

"The hospital was wonderful -- they asked if I wanted any extra scans for reassurance.

"Just for peace of mind, I said I'd get one at 34 weeks. We went in and yet again our world fell apart in so far as we were told that the heart looked quite complicated as it had grown."

An appointment was made for the couple with a cardiologist at Crumlin Hospital and tests there revealed that the baby had four serious issues with his or her heart -- one of which alone could have proved fatal.

"The cardiologist said that although none of the soft signs for Down syndrome had manifested themselves in any of the scans before, sometimes a heart condition could go hand in hand with a chromosomal issue so he said we should consider doing an amniocentesis," says Cronia.

The couple was aware that there is a very small risk of miscarriage from amniocentesis but the minute percentage along with the confidence they had in their consultant's abilities meant they agreed on having the test. Dad Tony recalls: "The scan was on a Monday and the amniocentesis was on a Wednesday. And we got the results on the following Tuesday."

The news came back that the baby had a third copy of chromosome 21 -- meaning that he or she had Down syndrome.

"It just threw us into this world of the unknown," says Cronia. "I found it really hard because this pregnancy was to drag us out of the depths of despair after Saoirse. But at least we knew beforehand and had some time to try to get a plan in place."

Cronia was induced at 39 weeks and delivered naturally. There was a team on hand to look after Conor and put him on medication needed for his heart condition.

"When he was born, he was so floppy and as pale as could be," says Cronia.

"He looked so poorly and I was automatically thinking, 'What is he going to have to deal with in his life going forward from today?' Surgeries were already being discussed.

"We literally had two minutes with Conor when he was born and we were able to take two photos and they took him off to special care."

The next day, a bed became available at Crumlin Hospital, which is where Conor would spend the next five-and-a-half weeks.

At two days old, he underwent a colostomy. Then at four days old, he underwent surgery on his heart.

The medical team did all they could for Conor but the couple was aware that things were touch and go for him and he may not have survived. They kissed him every night, not knowing if he would still be there in the morning.

"There were times when Conor seemed to be hit with everything that was remotely linked with Down syndrome -- anything where there was a 2pc chance physically, it happened to Conor," says Cronia.

He was able to come home at five-and-a-half weeks.

It was a steep learning curve but the couple coped with it -- drawing up spreadsheets to keep track of the 18 doses of medicines he needed to be given throughout a 24-hour period.

Then one afternoon, Conor (then four-months-old) went into heart failure.

"I knew something was wrong -- he was so upset, screaming unbelievably and his whole skin colour had changed," says Cronia. "His temperature was through the roof."

His slim chance for survival was only possible through open-heart surgery and thankfully he made it through the six-and-a-half hour procedure.

For the first few days, it was a waiting game to see if he'd recover, but he was home within two-and-a-half weeks and things finally started to go in his favour.

His colostomy was able to be reversed and a hernia that had developed was removed in the same operation.

He had to be peg fed through his tummy but later was able to make the transition to being spoon fed.

A serious problem arose with sleep apnoea but a later operation helped.

While it takes Conor a little longer to reach the milestones of childhood development, he gets there with time. He stood up for the first time on New Year's Eve 2012 and walked between his mum and dad for the first time in April this year.

His main challenge now is his speech development. Conor uses Lamh sign language, which Tony and Cronia went to classes to learn and then taught him. They found the classes were a very good way to share experiences with other parents of children with Down syndrome.

For 10 months after they went to classes, Conor didn't respond at all to the sign language. But then when he was 18-months-old, he gave his parents a wonderful surprise.

"We always went to his cot together in the morning to get him up," says Cronia. "He'd started in a creche nearby which he loved from the first day.

"We went to lift him out of the cot and he sat up and said in sign language, 'You drive me to school to play with my friends'.

"And the two of us just burst out crying because he had never used a single Lamh sign before.

"Even earlier today, he was able to tell me he was hungry. Without the sign language, I don't know how he would have been able to tell me that."

With baby Beau being born a few weeks ago, it's brought home to Cronia and Tony just how different the two experiences have been. Conor was seriously ill and wasn't able to come home for five weeks.

"It felt very strange to be bringing Beau home after only a couple of days," says Cronia. We didn't really get to appreciate becoming parents the first time around," says Tony. "It was all about keeping Conor alive."

Conor is thriving now. At this stage, it doesn't look like Conor will need to have any more heart surgeries. He gets support services such as physiotherapy through St Michael's House and he is attending pre-school this year and next year.

He recently took part along with Cronia in a Pumpkin Playdate in aid of Down Syndrome Centre.

Cronia and Tony support the idea of there being a one stop resource like Down Syndrome Centre (see panel).

After such a shaky start, the future looks bright for Conor.

"The name Conor means strong willed and we couldn't have picked a better name for him," says Cronia. "He's so determined -- just seeing him trying to walk or talk, it's never a case of Conor not trying.

"Things happen when they happen with Conor but it's not for want of trying."

Irish Independent

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