Medical specialists say companies that store umbilical cord blood mislead parents by raising their hopes of future treatments to fatal illnesses. But one father who stored the blood said it allowed "life changing" treatment for his daughter. REBECCA QUILLIAM of NZPA looks at the debate.

Wellington, March 5 NZPA - Auckland six-year-old Maia Friedlander suffered a debilitating brain injury after being born without enough oxygen.

She was left "mentally delayed", her father Daniel told NZPA.

He and his wife Jillian spent three years going through speech behaviour, occupational therapy, up to six hours a day with no real results, he said.

"We really did face a lifetime of therapy with no prospects of improvement and that was what the experts stated to us."

They were desperate to find a remedy, Mr Friedlander said. "If they told me to put my child upside down for an hour or two a day, I would have done it."

Maia was described as a "non-active" individual with mild cerebral palsy.

In 2008 his wife discovered a programme at Duke University at North Carolina in the United States which used patients' own cord blood to help treat brain injuries. Maia had her cord blood stored when she was born.

"Ever since then and on her return, she has made a significant improvement -- more than anyone could believe," Mr Friedlander said."

There had been good days and bad days, he said.

"But at the beginning of summer she needed a life jacket to swim, now two months later she's swimming with no device at all."

Maia now goes to school, is a year behind her age group, but with a helper is catching up, Mr Friedlander said.

"For me and my wife we both believe (the stem cell therapy) was life changing.

"It came down to doing this for our child, there was no downside. We had nothing to lose and we only had hope."

The Friedlanders are one of just two New Zealand families who have been helped by storing their child's umbilical cord blood, kept at the country's sole cord blood storer CordBank.

The company said it has "several thousand" parents store their child's cord blood for a first payment of $2750 plus a $200 annual storage fee.

CordBank said it stored "precious umbilical stem cells that can be used to help them survive many life threatening illnesses and conditions now and into the future".

"Banking your baby's cord blood is a natural way to protect your baby's future health," the company's website says.

But Otago University professor of medical ethics Grant Gillett said some companies in the industry would convince parents to store their baby's stem cells as a sort of health insurance, which would probably never be needed.

"The state of the play at present is the promise that's usually held out when such stem cells are banked is over the next few years we will develop techniques whereby new organs will be grown from stem cells.

"But at the moment the technology doesn't exist to do that. At the moment we cannot duplicate organs from stem cells, because there are a lot of things we don't exactly know. We don't exactly know which tissue modulators are required to allow stem cells to form themselves into a functioning organ."

It was a "desperately complex business", he said.

"You can tell that as soon as you reflect for a moment on the fact that the genes in your eye are exactly the same as the genes in your big toe."

However, he said children suffering some types of cancer, such as leukaemia, could benefit from the process.

"But it's a big step from there to the idea that you can make new organs. And given that only a very few children ever suffer leukaemia and we have other ways of grafting them to restore their blood making capacity...it's all a bit pie in the sky."

CordBank also stated on its website cord blood stem cells were being used to treat nearly 80 different diseases.

"And every day new cord blood therapies are being used for brain injury, juvenile diabetes and cerebral palsy."

But Prof Gillett said cord blood had only been proven to be effective against very few diseases.

Cancer specialist Associate Professor Michael Sullivan at the Christchurch Children's Hospital has published a number of papers on the subject, reviewing storage of cord blood for personal use.

"There is absolutely no evidence storing your own cord, your baby's cord, has any significant likelihood of being used in the future, as opposed to having a bank of cords you can call on and match them to people who need them."

The number of cases where people have used their own cord blood for treatment of illnesses was "miniscule", he said.

There was a legitimate study at Duke University looking at uses of cord blood for treating children with cerebral palsy.

"The fact that that study is happening has been exploited, and now there's all these commercial companies offering cord blood treatment, or so-called treatment, which is completely unproven, and people have wasted a lot of money on it."

Most children who went to places like Duke University for treatment also received the best physical therapies the school had to offer -- that they might not have had access to here -- which could affect their response to treatments, he said.

"There is a strong desire from parents to notice an improvement -- so there's an over-interpretation of improvement," he said.

"In the last 15 years since these cord banks started up the number of cases published in the medical literature showing a benefit from (people's own) cord blood for the treatment of their cancer is three cases."

Nearly all other cancer cases as well as other conditions have required blood from somebody else's cord blood, he said.

"In the US, as of about 18 months ago, there was some 750,000 cords in commercial banks."

It was a $4 billion industry, Prof Sullivan said.

The need for cord blood has been replaced by other technologies that have been developed in the last two years, he said.

Cordbank co-founder Jenni Raynish has defended her company, saying it did not focus on future organ replacement therapy.

One family who had stored cord blood with the company had successfully used it to treat their child's cancer condition, she said.

And there were "hundreds" of other similar cases worldwide, she said.

If families saved their children's cord blood now, there could be a future opportunity to use it for a range of different health conditions the children might face, such as brain injuries, Ms Raynish said.

She acknowledged the procedures at Duke University were still in the clinical trial phase, which meant they were not proven yet.

"But you've got 150 people around the world saying this makes a difference.

"For these families, saving the cord blood gave them the option of having their children treated with their own cord blood."