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Colette knows that a heart transplant is in her son’s future and she also knows that donor hearts are in short supply.
“Every day is frightening,” this is how Colette Dunphy describes life as the mother of a child facing the real prospect of needing a heart transplant.
Colette Dunphy’s 14-year-old son Braiden was born with a congenital heart condition which means that he will need a new heart in the near future and that is a terrifying and worrying prospect for his mum.
Braiden was born with a condition called Hypoplastic left heart syndrome; a complex and rare heart defect in which the left side of the heart is critically underdeveloped. He also had a number of additional medical issues including being born without a spleen.
In babies like Braiden who are born with this condition, the left side of the heart can’t effectively pump blood to the body. Instead, the right side of the heart must pump blood to the lungs and to the rest of the body.
When Braiden was just six months old, he underwent lifesaving heart surgery. At just six years old he had more complex heart surgery after which he developed complications and had to be placed on an ECMO machine for a week. The ECMO machine takes over the work of the heart providing time for the child’s body to rest and recover. Braiden also suffered a stroke.
“It was scary, we knew the procedure was going to be really difficult, but we didn’t expect it to go the way it did, and we didn’t expect him to have a stroke,” Colette said.
“ It is obviously very frightening for parents of children who need organs because the supply of organs is really limited,”
Although a hugely worrying time for Colette and her family thankfully Braiden made a full recovery but still has some weakness on his left side.
Today aged 14, Colette said that Braiden was doing well however, his condition means that he tires easily, and he cannot run or play sports like most boys his age.
Braiden is stable at the moment however, Colette knows that a heart transplant is in her son’s future and this is a hugely worrying prospect not least because she knows that donor hearts are in short supply.
“It is obviously very frightening for parents of children who need organs because the supply of organs is really limited,” she said.
“The idea that he will need a heart transplant is terrifying in itself, the idea of the procedure and if it will work but I think what is most frightening is knowing that the prospect of getting a heart is very slim.”
Colette said she has learned to cope with the fact that her son’s future depends on the generosity of a stranger however, she added “every day is frightening.”
She said she carries an organ donor card and she would encourage everyone to do the same for themselves and their children.
“ We are relying on other people’s generosity to carry a donor card to essentially save Braiden’s life at some point in the future,"
Colette has encountered a lot of fear and trepidation around organ donation from people who simply don’t want to talk about the topic.
“I find even with my own friends and family knowing Braiden’s situation, that it is just something people don’t want to talk about so, in not talking about it they don’t carry a card because they just don’t want to mention it.”
While Colette said that she understood people’s reluctance to discuss organ donation, the fact was that Braiden’s and countless other children and adults’ futures depended on people having these difficult conversations.
“We are relying on other people’s generosity to carry a donor card to essentially save Braiden’s life at some point in the future,” she said.
Organ Donor Awareness Week takes place from March 30 to April 06, 2019. Organised by the Irish Kidney Association, the focus of Organ Donor Awareness Week is to remind people to talk to their families about their organ donation wishes and keep the reminders of their decision visible by carrying the organ donor card, permitting Code 115 to be included on their driver’s licence or downloading the ‘digital organ donor card’ APP to their smartphone.
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