The Yomiuri Shimbun
Japanese hospitals have handled at least 29 brain-dead children under the age of 15 in the year since the enforcement last July of the revised Organ Transplant Law, which permits organ donations from brain-dead children in that age bracket, according to a Yomiuri Shimbun survey.
Not included in the 29 cases was the unprecedented heart transplant in April from a brain-dead donor identified only as a boy aged 10 to 14.
The 29 cases included 12 children whose hearts continued to beat, aided by artificial respirators and other life-support equipment, for more than 30 days after brain death was declared.
The law stipulates that organs can be removed from children several days after they are legally declared brain-dead, if their families give consent. This can be interpreted to mean the families of such children are allowed to determine when the children's lives are terminated.
However, the 29 cases included some instances in which the families of donors had not been clearly informed that their children's hearts could continue to beat for an extended period after they are declared brain-dead.
The Yomiuri Shimbun sent questionnaires to 56 medical institutions nationwide designated by the Health, Labor and Welfare Ministry as facilities capable of handling organ donations from brain-dead patients. A total of 54 medical institutions, or 96.4 percent, replied. The Yomiuri Shimbun compiled the survey results as of late June based on questionnaire responses and additional reporting.
The revised law allows the families of brain-dead patients to decide whether to donate their organs unless the patients are on record as refusing to donate them.
In 13 of the 29 cases of children diagnosed as brain-dead, doctors and families discussed organ transplants. The subsequent condition of nine of those patients was revealed in the survey, with six of them continuing to have heartbeats for more than three months after brain death was declared.
One case involved a girl who had been declared brain-dead before the new law took effect, whose heart continued to beat for more than two years.
In the remaining 16 cases, doctors did not discuss the possibility of organ donation with parents because of suspicions of physical abuse or other reasons.
The subsequent condition of 11 patients in that group was also revealed in the survey, with six of them continuing to have heartbeats for more than 30 days.
Generally, adult hearts stop within a week after a brain death diagnosis. But children's hearts--especially those of small babies--sometimes continue to work longer due to children's strong vitality. It is therefore possible that a family's decision will have a major effect on how long a brain-dead child's body goes on living.
A fiscal 1999 report compiled by the ministry's research team included a case in which a brain-dead child's heart continued to beat for more than 300 days. But in the report, there were no cases in which children recovered consciousness or the ability to breathe on their own without respirator after they were diagnosed as brain-dead.
The ministry research team said in a fiscal 2009 report that families should be given thorough explanations about the possibility that children would live long after being diagnosed as brain-dead and that it was reasonable to leave the final decision on the declaration of a child's brain death to the family.
However, the ministry guidelines on the Organ Transplant Law and the Japan Organ Transplant Network's explanatory material for families do not describe the possibility that a child's body may survive for a long time after a diagnosis of brain death.
Explaining brain death to families depends entirely on doctors. But the Yomiuri survey revealed that some families did not remember doctors explaining their children's brain death to them.
University of Tokyo Prof. Masashi Mizuguchi, an expert in pediatric neurology, said: "Doctors are responsible for explaining fully about the possibility that children would live [in terms of having a beating heart] long after a brain-death diagnosis to the families who are consider donating their children's organs. If insufficient explanation causes misunderstanding [between doctors and families], it might develop distrust toward organ transplantation."