Heart Children.

Heart Children.
By Sue Leonard.
Published by the Irish Independent, Health and Living, July 21st 2008.

Jim O’Brien is 32. He suffers from chronic heart failure. He lives a relatively normal life thanks to his medication, but he has to watch his diet, and take care not to overdo things.
“Late nights aren’t great for me; and the gym is off limits,” he says. “But I can cycle and walk at my own pace.”

Jim was born with a severe heart condition. And back in 1976 the state of heart surgery was relatively poor.
“I was born blue,” he says. “I had transposition; that means that my pulmonary artery and Aorta are reversed. I immediately got a ‘baffle’ which helps the blood to flow properly, and when I was two I had major heart surgery in the Royal Brompton in London. You could not get surgery in Ireland back then.

“I stayed in hospital for six weeks. I slowly recovered, and by the time I started school I could do most things. I could play football, ride my bike and swim, no problem. But I couldn’t keep up with my friends.

“At 13 I wanted to take football to a higher level. I began to train, but at my check up, the cardiologist noticed there’d been strain on my heart. I told him about the football, and he said, ‘no way!’ He said ‘golf or chess are your level.’ That was a difficult moment.”

Chairperson of Heart Children Ireland, Jim now manages his condition well.
“I know something is wrong if I get palpitations,” he says. “I get them once a week, and then, sometimes, I feel tightness across my chest. I just sit down and relax when that happens. There is no need to panic.

“Three years ago I felt faint and kept losing consciousness. I went to A and E in the Mater, and it turned out the medication I was taking for my cold contained a large amount of caffeine. That was what caused it.

“My condition will deteriorate with age,” he says. “Ultimately I will need a heart transplant. With technology improving, though, there are other measures they can take first. They can now put a small defibrillator in my chest; that would kick my heart into action if it missed three beats.”

A baby born with Jim’s condition today could expect a much better quality of life.
“The world has come on in leaps and bounds in cardiac care in the past ten or twenty years,” says Dr Paul Oslizlok, a Consultant Paediatric Cardiologist at Our Lady’s Hospital for Sick Children.

“Take Hyperplastic Left Heart Syndrome; a condition where the left side of the heart does not form properly. 15 or 20 babies are born with that condition in Ireland each year and in the past it was inoperable. Those babies would have died.

“We can operate, now, on more and more complex conditions and with greater success,” says Dr Oslizlok. “And thanks to medical advances we can avoid open heart surgery in a lot of cases. A lot of operations are carried out through cardiac catheterisation. Holes can be opened and closed this way.” (When a tube passes through a vein to the heart, so avoiding full surgery.)

“It’s difficult telling a parent of a new, healthy looking baby that the baby will not live without surgery; and that it may, eventually, need a heart transplant,” he says. “That is an enormous amount to take in. But maybe, in ten or fifteen years technology will have advanced. Maybe we will be growing specific hearts for specific babies.”

The cardiac unit At Our Lady’s Hospital is seriously understaffed. There are 5 consultants and there should be 10.
“I work a 12 hour day, but I love my job,” says Dr Oslizlok. “It’s a remarkable thing to do. To find out what is wrong with a baby and make it better.”

James Mohan was born with a serious heart condition. At birth though, the six and a half year old seemed well. Delivered by C-section because he was breech, he looked healthy and nicely pink.
“James latched onto the breast immediately,” remembers his mum, Brenda. “He seemed absolutely fine.”

The next day, though; when the paediatrician came to check him over, he heard a heart murmur.
“He asked us if there was a history of it in the family, and he told me he’d have to take James up to ICU. Shane and I weren’t too worried at first.

“When we arrived up in ICU, though, James was lying under a hot lamp, with wires coming out of him. I remember thinking, ‘This is getting hairy.’ The Doctor said, ‘I think you should sit down.’

“He said, ‘your baby is very, very sick. We don’t know what exactly is wrong because we haven’t the machinery here; so we’re sending him across to Our Ladies Hospital in Crumlin.

“I remember asking the nurses, ‘is my baby going to die?’ They could not say. They wouldn’t meet my eye. It was terrible.”

Shane went to Crumlin with James; but Brenda had to stay behind. The hospital did loads of tests; and Shane went back to the Rotunda that evening, taking a friend, Celine, who was a nurse, with him.

“Celine explained what his condition meant. She said they could fix him up until they could fix him no more; and then he would need a heart transplant.

“I went to Crumlin during the day, and back to the Rotunda for a few days; then the following Monday we went to pick James up.

“They explained that James had been born with his pulmonary artery and his aorta back to front. And he only had three chambers in his heart. They’d been worried he wouldn’t get through that first night.

“They said they’d operate when he was nine months old; and meanwhile we were to treat him as normally as possible. They said he’d always get tired; and that heart children have a third of the normal energy.

“That first year was tough. We were so scared because we did not know what to expect. We just cherished him every day.”

That first operation went well. The second one, though, performed when James was 4 was tougher.
“It was hard having to explain it to James,” says Brenda. “And he seemed to blame me. There were times he would not talk to me. Shane became the person he’d cuddle up to.

“I’d had another baby by then; Tom was 2 ½ and I’d just become pregnant again. I was so pleased. Then I had a miscarriage. That was devastating.”

James started school at five. But his first year was tough. He couldn’t keep up with the other children in the playground, and they teased him. They didn’t realise there was anything wrong with James, because he doesn’t look sick.

“That’s the hard thing,” says Brenda. “And you don’t know how much to explain to other children. You don’t want to frighten them.”

He’s happier this year. He’s made friends who don’t want to play football all the time. At the moment James is well. He’s only missed one day of school in his almost two years there; and that was due to a bug; not his heart.

“He’s well for a heart child. We’re lucky,” says Brenda. “And technology is improving all the time. They were saying he’d need a transplant in his teens. Now they’re saying it will be in his thirties or forties.

“He will need a procedure next year though,” she says. “It won’t be open heart surgery; it’s done through cardiac catheterisation. That will be hard for him.”

There’s one good thing though. The charity, Heart Children Ireland has recently set up a website for children. It explains how the heart works; who children will meet during their stay in hospital, and what the procedures are.

“It’s a wonderful site,” says Brenda. “I’ve shown it to friends of James’s. They now understand what is wrong. When he goes into hospital, the school will be able to access the site on their whiteboard. They will all be able to see where James has gone. That’s amazing.”

HEART FACTS.
· 600 babies are born each year in Ireland with Congenital heart problems.
· 300 of these will need an operation in infancy. The rest may not need surgery; or may need an operation later in life.
· In the mid eighties 20 -30pc of babies born with severe heart conditions survived until adulthood. Today that figure is 90- 95 pc
· The rate of congenital heart problems is high in Ireland compared to that in the UK or France. This is because, without termination, Ireland has a high rate of Down syndrome. And half of babies with born with Down Syndrome have a heart complaint.

For More information and Support; www.heartchildren.ie

© Sue Leonard. 2008.