Belfast Telegraph Babies' Hearts appeal: Dig deep and help us cap a brilliant Christmas for brave kids like Harry
A mother who was told her child had a cold only to be diagnosed with heart failure hours later has given her backing to research that could find the cause of the life-threatening condition.
Edel and Gerard McCann, from Benburb, Co Tyrone, have urged readers to dig deep for the Belfast Telegraph's Christmas Appeal which is supporting a research project aimed at investigating the cause of congenital heart disease.
They have personal experience of having a child diagnosed with heart problems after the birth of Harry in 2006.
Harry, now a lively seven-year-old, had problems feeding for a few months after birth.
By October 2006 the couple, both 36, knew "something wasn't right", so they took him to a GP.
"He was just so lethargic and not doing well but they diagnosed a head cold and sent me home," said social worker Edel. "He just deteriorated. We were finally given a letter to go to Craigavon Area Hospital and he deteriorated very quickly."
A video link-up with Belfast was carried out and within a few hours it was explained Harry had a serious heart condition and would need open-heart surgery.
"It went from being a head cold. All in a matter of hours," she said.
His condition was atrioventricular septal defect, or AVSD, which means there is a hole between the atria and the heart's ventricles.
Paediatric cardiologist at the Royal Victoria Hospital Frank Casey met the family the next day.
"He was amazing," Edel said. "He took great time to explain. The first thing I thought was I had done something wrong in the pregnancy – did I take a headache tablet, was it a cold that I had?
"But Frank went out of his way to explain we had done nothing wrong."
By January 2007 Harry was in and out of hospital and by February he was admitted to Clark Clinic to undergo open-heart surgery – which lasted eight hours.
"I stayed with him the whole time in the hospital for three weeks – I suppose I was just afraid to leave his side. He was unwell and I just didn't want him to be on his own," Edel added.
Harry then got home and has been doing well since. He is now at primary school.
"Any mum and dad who have a baby who has heart problems will have feeding difficulties," Edel explained.
"The one natural thing you want to do as a mum is feed your baby, so I was just so looking forward to giving him a bottle.
"But it was 18 months before he could – but it was momentous whenever he did."
Since the surgery Harry – who has two younger siblings Alex (4) and Annabel (four months)– has not been hospitalised.
"It is a feat in itself," Edel said. "You couldn't compare him with a seven-year-old who doesn't have a heart condition. But there can be times when he does tire a bit, particularly in the winter time if he picks up a chest infection.
Edel was speaking as part of the Belfast Telegraph's Christmas campaign which is this year supporting Chest Heart & Stroke's Baby Hearts Appeal.
Until tomorrow, we are appealing for 800 new supporters to donate at least £25 each, to pay for 110 babies to take part in the study.
But no matter what the amount donated, it will make a difference.
Edel said: "I love my son but if I could have taken his heart condition away I would have. This research could help do that in the future for other parents."
Evan's homecoming is 'perfect gift'
Evan Swann's parents have described finally being able to bring their baby boy home from hospital as the "perfect Christmas gift".
After 10 months of sitting anxiously by his bedside as he underwent heart surgery, Jenny and Robin Swann now have their son in their house in Kells, Co Antrim, for the first time.
Baby Evan was born with a congenital heart defect in February and needed life-saving surgery in England.
When he wasn't in England, the only other home the little boy knew was the Royal Victoria Hospital in Belfast.
But this month his proud parents got the go-ahead to take him home for his first Christmas.
Robin said the family were just "over the Moon".
"It is a complete change of scene for him from the ward surroundings, which were always busy and people about," he said.
The father-of-two said the couple were "on eggshells" when they brought him home.
"I don't think I've managed more than two hours of sleep at a time, but Evan has slept the night through.
"There's quite a routine of medications, but he's home."
Hospital surroundings in Belfast and Birmingham had been a second home to the couple, who also have a daughter, Freya.
Evan was diagnosed with (AVSD) – in simple language, three heart chambers instead of four and one valve in his heart instead of two. The little boy also has complications with his bowel, and only one kidney.
Robin, an Ulster Unionist MLA, split his time between work and the hospital.
Jenny would arrive at the hospital at around 9am every morning and stay until late evening when Robin would take over.
"Jenny and myself were passing ourselves in the ward while one was going to pick up Freya the other was going to sit with Evan," Robin said.
"Our own target was to have him home by Christmas, and we have. To us there could have been no more a perfect gift," he said.
Evan still requires regular visits from medical professionals and he still has to go back to the Royal one day a week.
"There will be challenges ahead but we have support and will get through whatever comes," Robin added.
He said the family were looking forward to the future.
"When Evan was diagnosed pre-natal and someone would have told us we would have been going to the hospital every day for 10 months, I honestly believe there would be something inside that would have said you couldn't do it," he said.
"But you get on with it, it is your child, your son."
ABOUT OUR APPEAL...AND WHAT YOU CAN DO
OUR AIM: to help fund Belfast-based research into congenital heart disease in babies by raising at least £20,000 through our campaign
OUR TARGET: to enlist 800 supporters who will donate £25 each, covering research costs for 110 babies in Northern Ireland
HOW TO HELP: you can make a donation via www.nichs.org.uk/baby or alternatively telephone 028 9180 2080
USE YOUR COUPON: just print out the coupon below , fill in your details below and send it to the address at the bottom to make a contribution to this vital three-year study