Red tape cut so teen can give liver to dying baby

By Cleo Fraser -

Health Minister David Cunliffe has stepped in and used his influence to pave the way for a teenage mother to donate part of her liver to save her dying baby's life.

Kataraina Pewhairangi, 18, was told she could not be considered as a live donor for 10-month old Teyah because transplant doctors involved understood the legal age was 21.

Baby Teyah has a rare life-threatening condition called biliary atresia and will die before her third birthday if she does not have a liver transplant.

New Zealand Liver Transplant Unit staff said as late as yesterday that Ms Pewhairangi could not be considered as a donor because she was not 21.

Her family were devastated and vowed to fight it.

After calls from the Bay of Plenty Times yesterday, Mr Cunliffe said he was moved by the stories about Teyah and stepped in.

"I couldn't understand why an 18-year-old didn't have the capacity to make that decision for their daughter," he said this morning.

His inquiries revealed the age restriction of 21 was set for the first six live donor transplants (the first was in 2002) by the Northern Regional Ethics Committee.

The age was set at 21 because it met international standards of the "majority of age" but did not apply after these trials.

The legal age for live donors is actually 16, although clinical staff have discretion case by case.

Asked why there was so much confusion, Mr Cunliffe said: "Let's just say that that matter has been clarified.

"There is no rule ... there was only a guideline set for the initial trial.

He downplayed his role: "It has not been my role to overturn any of the guidelines. I just sought some clarifications."

Ms Pewhairangi, who was by her daughter's side at Starship Hospital in Auckland this morning, was delighted at the outcome.

"I just can't believe it," she said. "It's so exciting."

Teyah had just undergone her second operation in a month.

Her condition causes ducts that take bile from the liver to the gall bladder and into the bowel to not form properly. This means the bile is unable to drain and instead accumulates in the liver.

Last month she was put on the list for an organ (she will need only part of an adult liver) but there are no guarantees whether she will get one in time. About 1 in 6 people waiting for a liver in New Zealand die without receiving one.

Ms Pewhairangi will be the youngest person in New Zealand to be a live liver donor.

But cutting through the red tape does not guarantee she can save Teyah's life.

There are extensive criteria that must be met before a person can be a live donor. This includes psychological and medical assessment.

Ms Pewhairangi said she would be getting an assessment "as soon as possible" but couldn't say exactly when.

Teyah's great- grandmother Lillian Purukamu is also in Auckland and was beaming with joy this morning.

For Ms Purukamu the news is especially good because two other children from her extended family have died from the same condition (the most recent in 2006).

The family hope to return to Katikati tomorrow.

Donor lobby group Give Life founder Andy Tookey said Teyah-Mere could have died if the media had not covered her case.

Mr Tookey said he questioned the motives of the Minister of Health getting involved, given the potential for political embarrassment if the child had died.

"What is quite annoying now is that everyone is saying: it is all fine because the baby can get a transplant but for eight months this mother has been under some incredible pressure because she was told she can not donate," Mr Tookey said.

He said he had questions over why the age of a donor should be 21 when that age did not fit in with other law, including the Bill of Rights.

"New Zealand has the lowest donor rate in the world and yet here's two people offering compatible organs and yet they've turned them down in favour of the child dying," Mr Tookey said.

Mr Tookey, whose own daughter needs a liver transplant, has asked the Ministry of Health under the Official Information Act if there are any other "silly rules" that stop people from getting transplants.

He said he had been told of similar previous cases where willing donors had been turned down because of their age, but all the children have been given a donated organ in the end.

- BAY OF PLENTY TIMES with NZHERALD STAFF

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