In 2010, an amendment to the Organ Transplant Law recognized as potential organ donors brain-dead children aged 15 and under. What did this have to do with the “Shimizu” family of central Japan’s Tokai region? Nothing, at the time. A lot, ultimately.
Their daughter, “Nozomi,” was born, as it happens, that year. Last October she had a sudden attack of vomiting. Taken to hospital, she was found to have an enlarged heart. Drug treatment didn’t work. Flown by emergency helicopter to a hospital affiliated with Osaka University, Nozomi was declared in critical condition. Doctors there gave the family the awful news: the child would need an artificial heart to tide her over until a transplant could be arranged. It was her last chance, they said; she was deteriorating rapidly.
The heart would have to be a simplified device to be suitable for so small a child. Nothing on the domestic market would do. A certain manufacturer in Berlin was the source to appeal to. It had what was required, but there was one problem: the device had not been approved for use in Japan, though in wide use overseas.
Japan’s notorious laggardness with respect to approving new medical products has spawned a neologism – “device lag.” Actually, as Shukan Post (Feb 6) tells the story, the government’s foot-dragging in his case is not entirely groundless. The operation involved is risky, with a 20% failure rate. But desperation breeds resolve, and the Shimizus were desperate. One way out was to enter Nozomi as a subject in ongoing tests of the apparatus.
Impossible, however. On Dec 8 the child suffered a brain hemorrhage, disqualifying her from participation.
What to do? She needed the artificial heart. She would die without it. The family, backed by the girl’s lead physician, made a direct appeal to Health Minister Yasuhisa Shiozaki via his homepage. The appeal included photos of Nozomi, heavily intubated.
Unfortunately, Shiozaki and the rest of the government were busy just then. A national election had been called in November, and campaigning was in full swing. Election day was Dec 16. Shiozaki’s governing Liberal Democratic Party won a crushing victory. Next on the agenda was the inauguration of a new cabinet. That was on Dec 26.
Now, perhaps? Well, yes. The wheels turn slowly, but they do turn, and on Jan 20 came the official special permission required. Unfortunately the child had died in the meantime.
“Losing a child is much worse than dying yourself,” the girl’s father, “Tetsuhiro,” tells Shukan Post. Was there no good to be extracted from the tragedy? There did seem one thing they could do – donate her organs. Since the 2010 amendment, only two brain-dead children under 7 had donated organs to other children who would die without them. Nozomi was the third, her lungs, liver and kidneys going to waiting children in the Kansai area.
"We realize we can’t bring our daughter back to life,” says Tetsuhiro. “So it seems natural to offer her organs in order that other children may live.”© Japan Today