HEALTH-JAPAN: Organ Transplants By-Pass Children

By Suvendrini Kakuchi Reprint | | Print |

Suvendrini Kakuchi

TOKYO, Oct 20 2004 (IPS) - Desperate for an organ transplant for his five-month old son, and up against all odds in Japan from ever finding a donor, Yukio Ohasi decided to bite the bullet and head to the United States.

”It was a very, very difficult decision for the family, who preferred to have the operation in their home country rather than go to the U.S.,” said Shiroyuki Ohasi, a relative of Yukio and a member of the ‘Save Yosuke’ group set up to raise funds for the boy.

”But it was their last choice to keep their son alive, and they had to take it. They now face the accompanying hardship,” added Shiroyuki.

Yosuke, one of the twins to his Japanese parents who were working in Chile, was born without his small intestine. Part of his large intestine was also missing. In order to stay alive, he has to be fed 18 hours a day through a catheter.

A website displays a photo of the beautiful baby who hovers between life and death unless an intestinal transplant is done quickly.

The donor organ, however, has to be from another child but Japanese laws prohibit children under 15 from donating their body parts.

In general, it is more difficult to find suitable intestine for transplant than is the case with the kidney and liver. Living donors are only used in rare instances, and the donor organ has to be A-B-O blood group compatible and within 50 to 60 percent of the recipient’s size.

Left with little choice, Yosuke’s parents have decided to send him for surgery in Miami where the chances of finding a donor are better. But the hefty medical bills are proving to be a big burden for the family and so far the Save Yosuke group has only managed to raise 400,000 U.S. dollars – less than half the sum needed to pay the hospital there.

”The sum is huge because of the high expenses covering an operation without health insurance in the United States. It would have been cheaper in Japan,” Shiroyuki explained to IPS.

The ruling Liberal Democratic Party (LDP) is about to introduce a new bill that would allow children who have been declared brain-dead to donate organs, such as their hearts, livers and lungs. But this might not get to see the light of day as strong resistance has already mounted against it; with many critics saying the legislation is ”too early” for Japan.

The LDP-proposed bill, supported by the Japan Paediatric Society expands the current legislature passed in 1997 that permitted for the first time the donation of organs from brain-dead adults who had given their prior consent.

Under the old law, doctors could not transplant organs from patients as long as their hearts and lungs were still functioning. Death came at the moment when the heart stopped beating – at which point it is too late to use major organs for transplants.

Japan’s first organ transplant was 36 years ago, when surgeon Juro Wada conducted a heart transplant using the heart of a brain-dead donor. The doctor was investigated on suspicion of murder, because the patient died less than three months after the operation. Prosecutors declined to indict him.

At issue now is whether the conditions for becoming a donor are too strict.

Unlike the United States and other countries where organ transplants from brain-dead donors are routine, Japan does not permit families to OK them if a potential donor has not expressed such a wish in writing.

Critics of the law say that condition is unrealistic.

In Japan, there’s no shortage of good intentions when it comes to organ donations: More than a third of Japanese say in surveys they would be willing to become donors after brain death. But only about five percent have signed donor cards.

Similarly, 55 percent of U.S. citizens said in a Gallup poll they were willing to donate organs, yet only 28 percent have put that wish in writing. Still, about 5,000 brain deaths in the United States result in donations each year.

”Most people never think seriously about the possibility of brain death,” said Taro Kono, a pro-organ donor advocate. ”Families make funeral arrangements for their loved ones because they know best what the deceased would have wanted – organ donations should be the same.”

According to Misa Gensei, spokesperson for the Japan Organ Transplant Network, many Japanese have to travel abroad for organ transplants – a process that could cause their families more hardship on top of the stress they currently endure.

”Often this option brings more deaths because patients cannot survive long-haul air flights, long waiting periods to save huge sums of money for surgery, and families suffer from the additional burden of dealing with foreign cultures in foreign countries,” Gensai pointed out to IPS.

Since 1997, the Japan Organ Transplant Network reported only 29 Japanese brain deaths resulted in organ donations – despite Japan seeing 3,000 brain-dead cases each year.

That seven-year period also saw 55 would-be-heart recipients die and another 75 still on the waiting list.

Dr. Norihide Fukushima, who has conducted heart and lung transplant operations, explained the difficulty in finding donors. He said it was primarily due to lack of public awareness.

”The decision to be a donor lies solely on the individual and this means there must be education and debate to nurture a climate where moral issues such as death, medical treatment involving transplants and the pros and cons of the issue can be discussed,” he told IPS.

Fukushima is calling for these themes to be discussed in schools so that debate can begin early.

The other problem is the lack of trust between patients and doctors.

The rigid social structures maintained in Japanese society have not allowed patients to question their doctors thus stifling an equal relationship that is essential for taking important decisions such as becoming an organ donor.

”In Japan doctors aren’t supposed to be challenged,” said a lawmaker advocating for organ donation. ”Changing the consent provision would put families in a very difficult situation.”