New life for heart patients, at a price

Hearts taken for Green Lane Hospital's heart library have helped to save lives. But, as REBECCA WALSH reports, at least one surgeon now regrets that some were taken without permission.

Stored away in plastic Tupperware containers at Green Lane Hospital's pathology department are more than 1300 hearts.

Preserved in formalin, the hearts, some at least 50 years old, are the focus of huge debate after it was revealed that many were taken from children and babies without parental consent.

Why were they taken? Long before the controversy erupted, the hearts, mainly from children with congenital heart disease, were used by surgeons and specialists to learn more about the organ's complexities and improve surgical techniques.

Yesterday, it emerged that many of the hearts had come from aborted foetuses.

Today the 1300 hearts in the hospital's heart library are still used by specialists around the country with the aim of helping future generations of sick children.

Children worldwide have benefited from the knowledge and techniques developed by New Zealand specialists.

Alan Kerr, a paediatric cardiac surgeon who started work at the hospital in 1961, says the heart library has enabled surgeons to learn from their initial failures and reduce mortality rates.

In the 1950s, although most of the general groups of heart conditions had been described, the detail needed to correct them remained largely unknown and within each group of conditions were "infinite variations".

"During those days there was an awful lot to learn, which could really only be learned from looking at the inside of hearts and looking at them at leisure.

"Looking at them [during] operations with them beating and blood squirting everywhere wasn't a good way to learn," Mr Kerr says.

"Obviously our failures were the ones we had to learn from and we did learn rapidly. The fact we were able to look at these hearts was a huge help."

The hearts, which came from all over the country, were sent to Green Lane for examination once the parents had agreed to an autopsy.

Dr Nigel Wilson, clinical director of the paediatric cardiology department, says the hearts are examined by an expert in cardiac morphology (the specialty of understanding the anatomy of the heart).

The examination may take one to two hours.

"The heart is dissected in a careful way to learn about how it is formed and also, if it was after an operation, what the operation did to try to correct the heart problem.

"When there has not been consent for removal of the heart then that cardiac morphology examination is done as part of the post-mortem and the heart is returned with the body back to the family."

Mr Kerr says the heart library has proved invaluable in a range of areas.

For example, in the past surgeons relied on angiograms before surgery, which involve putting a cardiac catheter into the heart, squirting in a dye that is opaque to x-rays and taking pictures of the beating heart.

But in some cases the operation was unsuccessful. By looking at the heart and holding it, surgeons were able to compare the real thing with their interpretation of the angiogram.

"We could work the whole thing out and then we could do better with the next one," Mr Kerr says.

"That has really been the key to the whole thing. We couldn't have made nearly such precise diagnoses if we hadn't been able to do that."

Mr Kerr says the library has also helped with one of the most common conditions surgeons see, called transposition of the great arteries - when the pulmonary artery comes off the left side of the heart instead of the right and the aorta comes off the right instead of the left.

At first surgeons had tried to correct the condition by putting the arteries back around the right way. In the 1970s five of the six children operated on using that procedure died.

"We gave up but we obtained a lot of detail from those hearts. Four years later we went back and worked on it again. Nowadays we can do that operation with a less than 2 per cent risk," he says.

In the 1970s and 1980s Green Lane made contributions to worldwide literature, including Cardiac Surgery, the leading surgical textbook by Dr John Kirlin and Sir Brian Barratt-Boyes, which drew directly on the heart library.

"You can say the Green Lane collection has benefited not just New Zealand children but children worldwide," Mr Kerr says.

There have also been dramatic improvements in surgical mortality rates. Today's mortality figure is about 3 to 4 per cent following surgery for congenital heart conditions, but in the 1960s the rate for many conditions was more than 50 per cent.

Mr Wilson says that among the many reasons for the drop are the surgeons' skills, more accurate diagnoses and greater understanding of the heart's anatomy,"which directly relates to having a heart collection".

From the 1950s to the 1970s the library was used primarily for learning about the complexities of the heart's anatomy and its malformations.

In the past decade the focus has been more on teaching and education.

Surgeons might refer to the library for a rare condition and paediatricians and cardiologists use it to learn more about patients' conditions.

Green Lane reviewed its heart library last year after an inquiry into a British hospital which retained thousands of body parts without consent.

Pathologists at Alder Hey Royal Liverpool Children's Hospital had stripped organs and other body parts from 2000 dead children without parental consent.

The organs were supposedly taken for research but many lay unused, pickled in boxes in a basement laboratory. Among the body parts discovered were 46 heads of children and fully formed foetuses.

Mr Wilson says the British inquiry found many of the parts had not been catalogued and were not being actively used for teaching, in contrast to the Green Lane library where the hearts are treated with "absolute respect".

About five to 10 hearts are added to the library each year by families who want to donate their children's hearts. Families are not asked to donate a heart unless the condition is extremely rare and has not been seen before.

"Most of the heart conditions have been categorised and analysed. We are evolving treatment strategies and treatment types but there aren't quantum leaps in new understandings. It's more trying to apply the existing techniques with fine tuning.

"We believe the right thing is to continue to use the hearts and respect them, and return them to the families if they wish."

Mr Kerr, who is also the former director of cardiac surgery at Green Lane, says obtaining the hearts without consent was wrong.

"I must say in retrospect, judged by today's standards, this was clearly quite wrong and I am apologetic about it.

"I did feel a profound sense of sympathy for the families and some guilt for not having grappled with this earlier."