Charlie with Pulmonary Atresia with Ventricular Septal Defect

Several hundred paediatric heart operations are carried out at Newcastle’s Freeman Hospital each year. ANDY FLETCHER gives an insight into a rollercoaster experience

MY 15-MONTH-OLD son was his usual happy self as he woke up and greeted me with a beaming grin. I smiled back – trying to disguise the feeling of dread deep in my stomach.

I knew only too well that just a few hours later my lively little boy would look very different. For a start he would be unconscious, lying flat on his back, with a tube in his throat hooked up to a ventilator to help him breathe. There would be a deep, freshly cut wound running down the middle of his chest, covered by a dressing but nevertheless vulnerable to infection. An array of dangling wires and drips would be attached to his body, supplying intravenous fluids and doses of morphine to numb the pain. Another tube, the grisly-looking chest drain, would be punched through the side of his torso, drawing off any fluid on his lungs.

Charlie didn’t know it, of course, as he waved across at his dad that morning, but he was about to undergo his fourth heart operation. And the prospect of what was in store for him that day was filling my mind.

As I was thinking things over, the surgeon paid an early-morning visit to our room in the Children’s Heart Unit at Newcastle’s Freeman Hospital. Mr Asif Hasan had carried out Charlie’s three previous operations, which were squeezed into a whirlwind 10-day period in the first seven weeks of his life.

“Charlie will live to be a happy old man,” Mr Hasan had told me and my wife a couple of hours before he first operated on our son.

We had to cling to his encouraging words during those rollercoaster few weeks, when we were spinning back and forth between the hospital and our home in South Shields, where Charlie’s twin brother George was just settling into his new surroundings.

Charlie was born with a structural heart condition called Pulmonary Atresia with VSD. One of the heart’s four valves, the pulmonary valve, had not formed properly, meaning his blood had no way of getting into his lungs to take in oxygen. He also has a VSD (ventricular septal defect) – a hole in the heart between the left and right ventricles, the two pumping chambers.

The normal course of action with this condition is to divert blood around the blockage where the valve should be using shunts, tiny teflon-coated tubes just a few millimetres wide. Then, when the child is older and the heart has grown sufficiently, a full repair is carried out, with an artificial pulmonary valve grafted into place and the VSD sewn shut.

The workload of the paediatric heart surgeon is staggering, with several hundred operations performed each year by the team at the Freeman.

So while this summer morning was a momentous one for Charlie and his family, it was an ordinary day in the office for Mr Hasan. He outlined the plan for the latest operation – to add another shunt and widen Charlie’s pulmonary artery, which was too narrow.

Surgery went well, but just under 48 hours later we almost faced our ultimate nightmare. Charlie had taken a turn for the worst the day after his operation, and his breathing had become erratic and laboured. His respiratory system was having some kind of breakdown, and on the Sunday morning he went into cardiac arrest. This happened just as his mum and I arrived at the intensive care ward.

At first staff wouldn’t let us in but they didn’t say why. This is not uncommon, so we took a seat in the parents’ room, unaware of the drama our boy was causing. Then the relative of another patient blurted out how horrible it had been when “the baby in the end bed” stopped breathing.

That was Charlie’s bed.

We leapt up in a blind panic, buzzed the intercom again and this time we were allowed in. The doctor explained what had just happened. The arrest had lasted three minutes, and Charlie had needed cardiopulmonary resuscitation (CPR) to get his heart working properly again. The doctor felt that, as Charlie’s blood pressure had been stable throughout, it was unlikely he had suffered any brain damage. As we struggled to take it all in, he laid his hand on my arm, adding: “Happy Father’s Day.” I would have settled for a bacon sandwich and the Sunday papers, but hey, you can’t have everything.

All families whose children have had heart surgery can recount their own extreme episodes. It is certainly no easy ride, but at least the outlook for young heart patients nowadays is better than at any time in the past. Just a few decades ago mortality rates were high – many children died during or shortly after operations in which new techniques were put to the test, or lost their lives simply because nothing could be done.

One early attempt at open heart surgery in the 1950s was made using cross-circulation, where the blood vessels around a baby’s heart were clamped off and he was kept alive using his father’s blood, which was pumped around both their bodies. The operation itself, to close the boy’s VSD, was a success, but the youngster died a few days later from pneumonia and cross-circulation was later abandoned. Thankfully, things have moved on a lot since then.

It’s now almost three years since Charlie last had surgery, and his next operation is on the horizon.

The stories of youngsters with heart conditions regularly feature in the pages of the Chronicle and one contained the following quote from a mum as her son prepared to go into hospital: “Every time he goes into the operating theatre I feel worse and worse because I love him more and more”.

Couldn’t put it better myself.

CHARLIE and his brother George share the bond of being identical twins. My three-year-old boys also share something else – the same heart condition.

Charlie has had surgery for the defect relating to the structure of his heart – the plumbing, in other words. But he and George also have a separate problem with the rhythm of their hearts – the electrics. Regular check-ups at the Freeman threw up abnormal readings a couple of years ago, and it’s thought the boys have a condition known as Long QT Syndrome. The heart resets itself after every beat, then an electrical impulse flashes through, causing it to beat again. With Long QT Syndrome, this resetting period – the QT interval – is longer than it should be, which throws everything out of balance and can lead to a dangerously fast heartbeat. It can be fatal, and in many children the condition lies undiscovered – often until it’s too late. My boys both have a daily dose of beta blockers, which should keep things under control.

The sad truth, however, is that there are many children out there with the same condition – and their parents have no idea their kids have something wrong with their hearts. Not to mention the teenagers and adults who have grown up unaware they have a problem.

Related Links
Andrew Fletcher writes a regular blog following Charlie and his brother for Newcastle Evening Chronicle. To follow their updates click on this link.

Andy with the Twins