Colette Dunphy , daughter of soccer pundit Eamon, was just 24 when she had her first son, Braiden. "I think when you're 24 and pregnant you're naïve and presume everything is going to be okay. I hoped everything was okay but I had no idea anything was wrong until he was three days old. We were due to leave and the doctors came to check him out because of a birthmark. They heard a significant heart murmur. Within half an hour of that he was in the ICU in the Coombe, and then two days later he was in Crumlin."
Braiden is now nine and has hypoplastic left heart syndrome. "It means basically that the left-hand side of his heart didn't develop." Colette has a second son, Zack, who is nearly four.
Remembering back to when she discovered there was something wrong with Braiden's heart she says: "I was terrified and at that point, not knowing, I thought he was going to die there and then because I realised this was one of the more complicated conditions, it's the most serious one you can be born with."
Within days, Braiden was diagnosed and Colette was told he would need several open-heart surgeries.
"There were other difficulties. They discovered he was born without his spleen, there were problems with his lung, his stomach wasn't in the right position. It really took a while for it to sink in and I would say it took a couple of years for the shock to leave."
As Braiden got older, Colette began to notice how the condition affected him. "Seeing him grow older and struggle with his energy, his lips would go blue in cold, and walking up and down the stairs or even being able to go on simple walks with him to the playground or the shop, things you take for granted were things we found a struggle. Sports days. I thought I'd be watching him playing football on the sidelines and doing other things. It's hard for me but it's harder for him."
Despite the fact that he can't do some of the things that most children take for granted, Braiden's quality of life is really good, says Colette.
"For Braiden it's the norm. He can't do competitive sport but he can do it at his own leisure or pace. He'd like to run around the playground or go on long walks and he'd like to be able to take the puppy for a walk, but 10 minutes is all he can manage."
Nobody could have foreseen the turn things took in 2011, when Braiden was due for a complicated surgery.
"For whatever reason Braiden's body wasn't able to cope. Six or seven hours later the doctors came back and said, we're really sorry, we don't think he's going to make it through. Everyone was devastated. He was in surgery for 13 hours. They didn't think he'd make it back to the ICU and then they didn't think he'd make it through the night, and the following day the doctors came and said there's a very small window, maybe another hour, and that will be it unless we can get him onto the ECMO machine, which was provided by Heart Children Ireland."
He had a day on that machine, and recovered, which Colette describes as a miracle. A few days later, Braiden suffered a serious stroke. He was six years old.
"His body was under pressure, he wasn't able to go on blood-thinning medication to prevent stroke, in that 24-hour period. He couldn't speak, swallow, eat or walk, his left-side was paralysed, that lasted a couple of weeks but with the help of Crumlin physiotherapists he began to speak and walk again. He has no effects of it now, maybe some weakness down his left side."
Often such difficulties are hard for children to deal with, especially if they feel they can't do things that other children their age can do, but Colette says, "he just thinks he's really special and brave. He's great, an adult wouldn't be able to go through what he did and remain happy. He's just really determined. He flew to Boston last year with his Firhouse karate club and he competed in Boston and got a gold medal. That was a really big thing in our lives."
When I ask her was she proud, her voice wobbles. "Was I proud!? I was so proud and he was so proud and everyone involved was and even people in Boston knew about his struggle and journey. He's really exceptional."
Braiden likes everything most nine-year-old boys like. "He loves his computer and his laptop and 'Minecraft'. He likes his own time too."
When Braiden was two, Colette went back to work for about a year and a half, but because he was so poorly it just wasn't an option.
'When Zack came along I was doing the full-time mom thing. I got involved with the charity Heart Children Ireland. I wanted to meet parents in similar situations and thought it would be good for Braiden to meet people with the same condition so they could play at the same level as each other. I didn't want him to always feel left behind or the odd one out. None of them can run around so they'll all play their computer and that's really important. When you're in school and everyone can do everything you can't do, you feel left out."
Braiden has to visit Crumlin hospital every three months and takes medication every morning and every night. He also has two to three hospital appointments a week.
"He's always doing something. It's a full-time job to keep him healthy and involved in clinics. That'll be part of his life forever. It's sad that that's all he knows but it makes it easier that it didn't come upon him halfway through his life."
Does it upset her to think about things he misses out on or things he might miss out on in the future because of his condition? "I would be upset thinking about when he's a teenager how it might affect him but that's just my upset. Braiden says, when I'm older I'm going to be an archaeologist and he believes that."
If you saw Braiden, you wouldn't know anything was wrong, says Colette. "He's funny and brilliant."
The two are clearly incredibly close. Having a child who is sick from birth creates a strong bond. "If he isn't with me I miss him. We've spent so much time together he's an inspiration to me," says Colette. "He's my son but I just admire him so much, in regards to his strength and bravery. I couldn't have done the things he's done and still be smiling."
- Colette Dunphy is a fundraiser for Heart Children Ireland. To donate visit www.heartchildren.ie
WHAT IS HLHS?
Hypoplastic left heart syndrome (HLHS) is a severe congenital heart defect in which the left side of the heart is underdeveloped. The left side of the heart is responsible for pumping oxygenated blood into the large artery that carries blood to the body.
(Health and Living)
Health & Living