NHS stories: Heart warning

Dr Michael Gatzoulis: "Patients need lifelong monitoring"

In the first of a series of articles BBC News Online reporter Jane Elliott looks behind the scenes of the NHS.

This week we focus on the work of the adult congenital heart team at the world renowned Royal Brompton Hospital.

Every day, more than 100,000 adults treated for congenital heart disease risk their lives, because they believed they were cured of the condition as children.

But surgeons warn it is never cured and that unless the adults who have slipped through the net get back into the hospital system, they risk premature deaths.

Dr Michael Gatzoulis, director of the adult congenital heart centre at the Royal Brompton hospital, London, and consultant cardiologist, urged patients who had had heart surgery 20 to 30 years ago to check in again.

He said patients needed lifelong monitoring.

Major surgery

"They can drop dead suddenly, or present with subtle symptoms which get worse, but these are patients who have had subtle problems with their hearts for some time and they might start thinking that their heart has always been like this and ignore the symptoms.

"We have had patients who have eventually presented with huge defects who have not known that they had problems.

In the past they thought their condition had been cured Dr Michael Gatzoulis

One patient who has benefited from the Royal Brompton's system of regular follow-ups is Claire Hutton.

30-year-old Claire, from Cardiff, has been a patient at the hospital since the age of nine.

Born with a congenital heart problem she was in a wheelchair for nearly a decade.

She was continually out of breath and needed major surgery.

Now, several major operations later, Claire has been given the all clear. She probably will not need another operation for the next two decades.

Her heart has been passed healthy and she is starting to reassess her life and maybe even make a few changes.

"I have been thinking about moving abroad for a few years or giving up my job as a secretary and retraining as an air hostess," she said.

But only last year such possibilities all seemed very unlikely.

Claire needed a major valve replacement. The operation was so serious that doctors told her mother there was only a 50% chance that Claire would pull through.

She spent more than four weeks in intensive care - under heavy sedation for the first three - before going onto the ward.

Life changes

"I was hallucinating like you would not believe and every time they tried to bring me round my blood pressure would go dangerously high. But I was not aware of anything that was being said or done."

I have lots more energy and I think life is too short not to enjoy it Claire Hutton, patient

After this Claire needed another operation on her arteries, but says her health is now the best it has ever been.

She is being weaned off tablets she has been taking for years and says her life is starting to blossom.

"I do feel a lot better since the operation, but it was touch and go.

"The last few years of my life have not been too bad, but before that I was very restricted and now I am trying to make the most of my health.

"I have lots more energy and I think life is too short not to enjoy it.

"I am going to the gym, which I could never have done before and I can keep up with people when they are doing things now."

She still bears the scars of her surgery, but says it is time now to look forward to the future and enjoy the life she has been given.

She has stopped taking the anti-depressants she needed to make her life bearable.

"I am just trying to come to terms with the fact that I am normal and that I shouldn't need any more operations for 20-25 years.

"The way that my heart feels now is the way it should feel and that is strange because it has never felt like that."

Common defect

Dr Gatzoulis said that in the past, many patients, who like Claire, had surgery for congenital heart disease (CHD) as children, had been lost through the system.

Treated originally as babies, they had continued to receive treatment up to the age of 16 and then they, and often their doctors, had thought them cured.

But Dr Gatzoulis said their problems were more often than not lifelong.

"CHD does not stop when patients are too old for paediatrics," he said.

However many people had had irregular if any contact with specialists since, only presenting when their problems became severe and life-threatening and chances for full recovery were not good.

Dr Gatzoulis said that if they were properly monitored and treated, patients with CHD could live healthy and satisfying lives until they were geriatrics.

CHD is one of the most common birth defects, seen in about 1% of newborns around the world.

Previously about half of these babies would have died before becoming adults.

Now most survive, and many even go on to have their own children, thanks to remarkable medical breakthroughs in the 1960s and 70s when so-called "blue babies" were given life-saving heart surgery or catheters.

Now there are estimated to be 250,000 adults living with congenital heart disease in the UK.

Dr Gatzoulis said it was vital that these patients were seen by specialists to allow them to lead as long a life as possible.

"Doctors are now becoming aware of the need for lifelong follow-up, but there is a need for health care systems and more resources to make this possible," he said.