Mum of toddler facing third open-heart surgery highlights importance of children's organ donations

Mum of toddler facing third open-heart surgery highlights importance of children's organ donations

The mum of a toddler who suffers a rare heart condition is appealing for more awareness of "invisible" conditions and a push to highlight the importance of children's organ donations.

At just two-years-old, brave Bobby Carolan has already had two open heart surgeries for his life-limiting condition and is facing a third operation later this summer.

The boy from Dundalk, Co Louth suffers from a rare congenital heart disorder called hypoplastic left-heart syndrome which means that the entire left side of the heart including the aorta, aortic valve, left ventricle and mitral valve is underdeveloped

The left side of the major organ is responsible for pumping oxygenated blood around the body and patients with this condition, it becomes harder for oxygen-rich blood to get around to the other organs and rest of the body.

Bobby underwent his first two heart operation in New Zealand where the family were living before they returned to Ireland when his aunt died of cervical cancer leaving behind a young family of seven.

Mum André now wants more awareness of the "invisible disease" and a push to highlight the importance of organ donation from children.

"When Bobby was diagnosed in my womb in New Zealand we were given the options of a termination or palliative care when he was born," she said.

"However he fought hard and was deemed suitable for the first two open heart surgeries. He faces the third in Crumlin Hospital in Dublin at the end of the summer, after which he has a 50% chance of surviving into his 20s.

If he's lucky enough to get to his teens then we have to look out for liver disease which he could develop from the medication. A heart transplant is not guaranteed to work because of the way his heart is connected.

"Anyway according to a specialist in Great Ormond Street in London, while the number of organ donations is on the rise, the number of heart donations from children has stayed the same for the last ten years.

"Irish children have to go to London for heart transplants and there are children as young as four here currently on the waiting list for a heart.

"Hypoplastic left-heart syndrome is an invisible condition and you always get people saying 'sure he doesn't look sick'.

"Bobby can't regulate temperature so sometimes his lips go blue but other than that, he does look like a normal healthy boy which is why people can be so discriminate because they can't see a heart condition.

Just because you can't see it, doesn't mean he's not suffering from a life-limiting condition and we need to change our mindset on how we discriminate against some people because they don't have visible ailments.

"We also need to highlight the importance of child organ donations. It's never nice to lose a child and the thought is unbearable but if it does happen, parents should think about possible life they could be giving to others."

According to the HSE's Organ Donation Transplant Ireland annual report for 2018, the number of Irish paediatric transplants performed in the UK between 2014 to 2018 was ten for heart transplants with the number of Irish children on the waiting list for heart transplants in the UK standing at five at the end of December last.

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