Speaking again after stem-cell transplant

Willie Terpstra (right) was able to speak again yesterday after her controversial surgery. Picture / Alan Gibson

Willie Terpstra was able to speak again yesterday following a controversial stem-cell transplant in China on Monday.

The Rotorua woman, who suffers from incurable motor neurone disease, appeared on television last night communicating with her voice rather than the talking machine she has used since the disease severely impaired her speech.

The 64-year-old's voice was hoarse and her words were hard to make out but her family, who are with her in Beijing, were overjoyed at her progress.

"Even if she can talk like this and the disease stops right here and the improvement stops right here, it'll be great. Now we can understand her again," her daughter Renske said on TVOne.

New Zealanders have been cautiously watching Mrs Terpstra's progress. So far there has not been the heated debate here that was roused in the United States over the use of tissue from aborted fetuses to treat muscle-wasting conditions.

Mrs Terpstra is the first known New Zealander to have the surgery, which is not approved for clinical trials in most countries.

Soon after the 50-minute procedure in a Beijing hospital - which saw two million stem cells planted into her brain under local anaesthetic - Mrs Terpstra was able to eat and drink freely for the first time in months.

"She woke up, had a drink and said 'I could swallow' and I could understand her saying it too," Renske said.

Her family were hopeful she would gain more relief in the coming days from the degenerative disease.

Health Research Council chief executive Bruce Scoggins believes the procedure developed by United States-trained Dr Huang Hongyun is controversial primarily because the cells used come from aborted foetuses, plentifully available under China's one-child policy.

That provided "something of a moral issue" for many people in countries where use of embryonic stem cells was not allowed, he said.

Here human tissue legislation, which set the guidelines for use, was under review.

Dr Scoggins said he had "an open mind at the moment".

The source of the stem cells and the manner in which they were obtained posed a number of ethical issues, said John Kleinsman, a spokesman for the Wellington-based Catholic bioethics Nathaniel Centre.

"It is our hope that adult stem cells will, in the future, be able to be used as a means of treating such debilitating diseases because there are not the same ethical dilemmas associated with their procurement," he said, adding: "We are all hoping for the best for her [Mrs Terpstra]."

Professor Donald Evans, director of Dunedin School of Medicine's Bioethics Centre, said Dr Huang's treatment was experimental and not enough information was available to determine whether or not it was bona fide.

There was no detail on what, if any, animal or clinical trials and research had been carried out, or on how many patients had been treated successfully or otherwise.

"We do not know how safe the procedure is," he said.

"It is raising hopes, perhaps unfairly, amongst people who are desperate for help."

With so many questions still unanswered, that hope could be forlorn and involve great expense. There was also the compounded suffering of the families involved to consider, he said.

"I feel like Madonna"

An up-beat Willie Terpstra declared yesterday: "I feel like Madonna with a haircut."

In the first update she has made to her website since stem cell surgery on Monday, the 64-year-old said she had been put on a drip and her shaved head measured in preparation for the treatment under local anaesthetic.

Using a pen, medical staff "made stripes all over my face," she said.

The only thing Mrs Terpstra felt were two injections.

"Then came the drill and that was a little noise but you don't feel a thing."

She could hear Dr Huang Hongyun put the stem cells into the holes drilled through the front of her skull "like little drips of water".

"Then it was all over and when I came out all the TV cameras were there," she said. "That made me smile. It was like a mad house."

Mrs Terpstra's family said they were now able to understand her speech, she was swallowing more easily and her bottom lip, which used to hang limply, was almost back to normal.