Heartfelt care

Without a machine, funded by charity, Colette Dunphy’s son might not have survived

COLETTE DUNPHY will never forget the terror of waiting for her son Braiden to come out of surgery. A year ago when he was just six, Braiden underwent open heart surgery which took 14 hours.

It was always going to be a complex delicate operation and Dunphy had been braced for a long vigil but after about six hours, doctors gave her the dreadful news that her child might not make it.

“It was terrifying,” recalls Dunphy. “My whole world seemed to be falling in around me. I could do nothing. There was so much stuff I wanted to say to Braiden. I remember trying to think what was the last thing I said to him.”

She and Braiden’s father, Freddie, have had many terrifying moments since his birth on September 4th, 2004. He had his first surgery when he was about six months old. But they now delight in a child who goes to school and, like his grandfather, the writer and soccer pundit Eamon Dunphy, got very exercised about how the Irish soccer team did in Euro 2012.

Having been diagnosed with hypoplastic left-heart system, a congenital heart defect, when he was just a few days old, Braiden had always been a battler. He survived the surgery in May 2011 but had to be placed on an ECMO machine – or extracorporeal membrane oxygenation machine – immediately.

“Doctors told us that the machine would give his heart a chance to rest,” explains Colette Dunphy “Without it, he would have no chance.”

The thing that frustrates Dunphy and at the same time fills her heart with gratitude is that the machine which saved Braiden’s life was bought with funds raised by parents like her, who know the terror of having a child diagnosed with a life-threatening heart condition. The machine was funded by Heart Children Ireland, a charity which Colette and Eamon Dunphy promote at every opportunity, knowing that other young lives hang in the balance.

“It is scary to realise that your child is depending on the goodness of other people and not on the Government,” says Colette Dunphy. “If parents did not go out and fundraise, no one else would provide the machine that saved Braiden and God knows how many other children.”

She was speaking as Heart Children Ireland unveiled another new machine, known as an Advanced Diagnostic 3D Echo machine. It has live 3D capabilities and allows the cardiologist to see the patient’s heart in real time, giving the experts a bird’s eye view of the defect without being too invasive.

A few days after it was launched Braiden was celebrating another milestone – his first school sports day in two years. Dunphy says there have been many miracles along the way. A week after the marathon surgery and the ECMO machine saving his life, Braiden suffered a stroke which cruelly robbed him of speech, the ability to swallow and to move his left side.

“His recovery since this time last year has been amazing,” says Dunphy. “The doctors keep saying whoever you are praying to has worked a miracle.”

Suzanne Treacy, chairwoman of Heart Children Ireland, says the charity is meant to be about supporting parents and families and not about raising money for life-saving equipment. Treacy lost her son Paul when he died aged just four, during a heart transplant operation in 1989.

Another son Alan had a transplant in 1996, also at the age of four – he has just finished his second year in university. Treacy points out that as well as funding life-saving equipment, the charity has helped establish the Maurice Neligan congenital heart clinic in what ironically used to be the smokers’ balcony at the Mater hospital.

She is glad the charity has provided life-saving equipment over the years but says probably the best thing it does for parents is arranging for a psychologist to travel around the State to meet families who are often desperate to talk about the many issues raised when a child has a congenital heart condition.

Treacy and Dunphy are in despair at the delay in getting the new National Children’s Hospital off the ground. “I understand that the country is in dire straits now but before it was, they should have done this,” says Dunphy. “It seems to have been more important to build a football stadium like the Aviva than to provide a hospital for our children.”

She says just as Government is content to let parents raise the money for equipment that the State should provide, it also seems slow to grasp the challenge of sorting out the children’s hospital.

“They can’t even sort out the site. It is very upsetting – they have to do this for the children who have not even been born yet.

“The tiles are falling off the ceiling in parts of Crumlin hospital. The Government has to get the finger out,” says Suzanne Treacy.