Organ transplant from child 'a bright ray of hope'

Organs of a brain-dead child under 6 years old are expected to be transplanted for the first time in Japan, raising hopes that more young lives can be saved in this country.

The Japan Organ Transplant Network said June 14 that a boy, who suffered from a severe brain disorder, was judged brain dead under the conditions set by the Organ Transplant Law at the Toyama University Hospital.

His heart and liver are expected to be transplanted to girls under 10 years old on June 15, while a woman in her 60s is expected to receive the boy's kidneys.

“Our son will live on as part of somebody else’s body. We are proud of him,” the boy’s parents said in a statement released on the Internet.

Organ transplants from children under 15 years old were legalized after the revised Organ Transplant Law fully took effect in July 2010.

The latest case will be the second transplant from a child under 15 years old in Japan. The first one, from a boy over 10 years old, was conducted in April 2011.

“(The family’s decision) will shed a bright ray of hope for many people, including small children,” Juntaro Ashikari, chief of the medical department of the Japan Organ Transplant Network, told a news conference in Tokyo. “We want to carry through with the procedures, respecting the family’s feelings.”

According to the network, 15 children under the age of 15 years were on a waiting list for heart transplants in Japan as of May 1.

Due to the lack of organs from young donors, families of small children with serious heart diseases have been forced to go abroad for transplants. The estimated cost of these overseas operations range from 80 million yen to 200 million yen ($1 million to $2.5 million), and the families have often taken out loans or set up donation campaigns to cover the expenses.

After the revised Organ Transplant Law was enacted in 1997, 118 children under 18 years old had hoped to go abroad for transplants by the end of last year, according to the Japan Society for Transplantation.

While 74 received transplants, 26 died before they left and 12 died overseas before the operations.

Norihide Fukushima, a professor at Osaka University’s department of therapeutics for end-stage organ dysfunction who had called for revisions to the Organ Transplant Law, says the overall situation has been worse.

According to Fukushima, only 10 percent of children have been able to receive transplants abroad, while the remaining 90 percent have died while waiting.

“A donor finally appeared in Japan,” he said. “Japan must become a nation whose people can help their compatriots.”

One big problem in finding organs from small, brain-dead children relates to the feelings of family, said Hiroyuki Yokota, a professor at Nippon Medical School.

“The highest hurdle is that families have difficulties convincing themselves that their children are brain dead,” said Yokota, who helped the government compile a manual on how to legally define brain death. “It is also difficult to suggest to families that they (donate their children’s organs).”

Kazuko Takahashi, director of the Japan Transplant Support Association, said the boy’s parents made a “brave and respectable decision.”

“The families waiting for transplants for their children have almost given up on finding donors in Japan,” she said. “(The latest case) has raised hopes that they may be able to expect transplants in Japan.”

The boy was diagnosed as suffering from hypoxic encephalopathy, a lack of oxygen to the brain, at the Toyama University Hospital. After the doctor told his family of the severe brain disorder on June 7, the family offered to donate the boy’s organs, according to the Japan Organ Transplant Network.

The boy was diagnosed as brain dead on June 10.

The issue of what constitutes brain death sparked furious debate in Japan. Government and medical panels were set up to examine the issue and the ethics involved. Doubts remain on whether procedures in the system are adequate.

Regarding the brain death of the boy, some experts said it is important to examine whether the family was able to make an independent decision and whether medical staff appropriately checked to ensure the boy had not been abused.

“It is necessary to investigate what happened and when before the boy was admitted to the hospital,” said Yuichi Hamabe, who heads the emergency medical center of Tokyo Metropolitan Bokutoh Hospital. “Investigations are also necessary on how the parents felt before they agreed to donate the boy’s organs and how medical staff approached them.”

Takahito Togawa, deputy chief of Zenkoku Kotsujiko Izoku no Kai, a group of people who lost family members in traffic accidents, said he is concerned whether utmost treatment was provided to save the boy’s life before he was declared brain dead.

“I think medical staff handled the issue carefully, but there are questions as to whether the parents were able to make a decision they would make under normal conditions and that they are satisfied with,” Togawa said. “I wonder at what stage and by what means the parents were informed of the transplants.”

The revised Organ Transplant Law prohibits donations from children suspected of being abused. Confirmation is required that abuse was not involved for donations from children under 18 years old.

An abuse prevention panel of the Toyama University Hospital concluded that the boy had not been abused. Prefectural police and a child consultation center also said there was no abuse or foul play involved, according to the Japan Organ Transplant Network.

Jiro Nudeshima, a research fellow at the Tokyo Foundation who specializes in bioethics, noted that half of the children whose organs were donated after heart death died from external causes, such as head injuries.

“The question is whether it has been possible to strictly check whether abuse was involved or not,” Nudeshima said. “The Japan Organ Transplant Network must disclose information for society at large to examine (whether checks were appropriate).”

Hideaki Nukui, a professor emeritus at the University of Yamanashi, expressed concern for the boy’s parents, while praising their decision.

“Judging from how average Japanese feel, the parents must have suffered substantial psychological damage. It will be important to provide appropriate care,” he said.