Shattered couple relive loss after heart discovery

By MARTIN JOHNSTON health reporter

Ian and Wendy Fittall say their lives were shattered last night when Green Lane Hospital revealed to them that it has held their dead baby's heart and lungs for the past 17 years.

"It has been 17 years of sheer hell. To lose your first son and then to find out this just brought it all back," Mr Fittall said.

The Henderson couple's second child, Lance William James, died in Green Lane's intensive care unit in December 1984, aged 8 months.

He had undergone open-heart surgery to correct a valve defect and his survival chances had been put at 50 per cent.

The Fittalls are one of the 18 families the hospital has matched up with hearts stored without specific consent.

Mr Fittall spoke to the Herald just hours after being told by the hospital.

Green Lane revealed last week that it was holding more than 1300 abnormal hearts, mainly from children, babies and aborted foetuses. The collection dates from 1950.

"We're in shock," Mr Fittall said, choking back tears. "At the moment we've no idea what we're going to do next."

He and his wife did not know if they wanted the organs back.

Mr Fittall said hospital staff in 1984 had not sought their consent for an autopsy on Lance, or to retain his heart and lungs.

"We only found out a little while later there had been an autopsy."

The couple had no idea the organs had been removed, but now, Mr Fittall says, the information explains difficulties they have experienced.

"My wife and I have found it very very hard to visit Lance's grave.

"It honestly felt - it might sound spiritual, I don't know - like he wasn't there.

"And now we know why we're starting to feel those things."

This blow comes on top of a "nightmare" run of bad news for the Fittalls and their six children.

On Thursday they learned their 16-year-old daughter must have an operation to remove her bowel.

And Mr Fittall has just been made redundant from his job as a helpdesk manager for internet company ihug.

Asked about monetary compensation, he said it would never bring Lance back, but it would be reasonable for the hospital to have to pay.

"My feeling is that they shouldn't be just allowed to get away with it, to do this and then just turn around and be able to say, 'Sorry'.

"They have shattered people's lives."

"We want real answers. Sorry is just not enough. How can you possibly ethically do that to a family, without even asking.

"In the old days it was called grave robbing. That's how we feel now."

"Ethically and morally, everything has gone out the window for me as far as hospitals are concerned," Mr Fittall said.

Green Lane was now offering counselling, but had not when Lance died.

"I think it's too much too late.

Mr Fittall said that because of a mix-up over telephone numbers, the hospital was unable to telephone the family, so police officers visited last night and asked them to call the hospital.

Green Lane spokeswoman Brenda Saunders said earlier that staff had spoken with around two-thirds of the 18 families after matching them with stored organs.

Six families wanted the organs back and six had opted to leave them with the hospital.

About 2100 people have called the hospital's 0800 heart line.

Ms Saunders said families who wanted to retrieve a heart would be given financial help to cover agreed travel costs of two people and burial of the organ.

Families in the Auckland area would be given a maximum of $500 and those from other areas up to $2000.

Hospital staff were about to start calling back families for whom there was no organ match.

Spokeswoman Brenda Saunders said half the 12 wanted to retrieve the hearts.

The others had opted to leave them for the hospital to store indefinitely.

Green Lane revealed last week that it has a collection of more than 1300 hearts, some dating back to 1950, that have been kept for medical education and research.

They came from aborted foetuses, babies, children and a few adults with congenital heart defects. Specific consent to retain hearts at the hospital has been sought from parents only since about 1990.

Previously consent for an autopsy was considered to cover retention of the heart.

The hospital has set up an 0800 heart hotline for inquiries from affected families.

About 2100 people had called by yesterday. An estimated 10 per cent may have a family member's heart in the collection.

A team of more than 60 hospital staff is working on matching hearts with families. This has led to the cancellation this week of almost all children's heart treatment, except urgent surgery.

Ms Saunders said staff were about to start calling back families for whom there was no match.

She said families who wanted to retrieve a heart would be given financial help to cover agreed travel costs of two people and burial of the organ.

Families in the Auckland area would be given a maximum of $500 and those from other areas up to $2000.

She said most callers to the hotline were upset, but not angry.

"They listen calmly. A lot of them have said it's been very helpful to go through this and have it explained to them."

She did not have details on how people would carry the hearts, which are preserved in formalin in plastic containers at the hospital.

"I presume it's put in a special container. There is a protocol around that."

The hospital is offering a ceremony and blessing when hearts are retrieved.

The former chairwoman of the Heart Children support group, Jo Lawrence, said her daughter Abigail had died aged 3 1/2 in 1996 after a series of operations at Green Lane for a congenital heart defect.

"I don't suspect that her heart will be in the collection, but I don't know for certain."

Mrs Lawrence said she and her husband did not need to know. They accepted that if it was there, it would be to help with research.

She said Heart Children was keeping neutral on Green Lane's handling of the issue, "because it's such an individual response, what people think and feel about it".

"While there are families who, understandably, are outraged and incredibly hurt and upset by it all, there are, equally, quite a number of families who don't need to know if their children's hearts are in the collection."