July 17, 2009
Posted: 603 GMT

TOKYO, Japan – One of the stories that have most affected us in the Tokyo bureau has been the trials of Japanese families trying to get life saving organ transplants for their children.

We have spoken to several such families, and profiled two of them. In both cases, the emotions involved are some of the most intense I have been through at this job.

These are parents fighting for, and sometimes losing, the lives of their children. But what is most striking is not the tragedy, it is the strength and determination of these families.

Just a few weeks ago, we had done a story about Japan’s organ transplant law and its effects on families whose children need a transplant to survive.

The law required donors to have provided written consent, and prohibited those younger than 15 years old from donating organs.

With next to no donors under 15, many Japanese families with children in need of transplants were forced to go abroad, in many cases in order to keep their children alive.

What’s more, the costs of doing so are exorbitant, at times between $1 million and $2 million dollars. Of course, very few families can afford to pay that much, so a system sprang up where those who had been through the process taught other families the best ways to raise donations.

They sought donations in the streets, in Japanese media, and on the Internet.

In our original report, we followed the family of 11-year-old Hiroki Ando, who suffered from cardiomyopathy. His doctors told him he needed a transplant in order to survive.

Hiroki’s parents had already lost one child who had the same condition, and they were determined to do everything they could to keep Hiroki alive. Read the story

This week, Japan’s parliament voted to change the organ transplant law.

The law is complex, and the central change is that now death for the purposes of organ donation would be brain death, not the stopping of the heart. Though it won’t take effect for a year, the new law will make it easier for children to receive donations at home in Japan.

We visited the Nakazawa family, who had campaigned to have the law changed. Their interest could hardly be more personal, as they had lost their 16-month old son Soutaro last December. He died in a hospital in California after they had managed to raise the 1.7 million dollars needed.

Doctors asked them why the Japanese children who came for transplants always arrived so late. Anyone who has lost a family member knows the depth of grief that can bring. In their case, it seemed unusually cruel, after they had gone to such lengths to raise the money and gone so far to save their son.

It would be natural, I think, for the Nakazawas to avoid reminders of Soutaro just to manage their grief. But when we walked into their apartment in Yokohama, it was like a shrine to their lost son.

His pictures filled three walls of the living room, along with his toys and other reminders.

Namie, Soutaro’s mother, said they couldn’t hide from their grief because they owed a debt to all those who had helped them raise the funds for his operation. With tears in her eyes she said she had thought the only way to repay them was to bring Soutaro home healthy but that was impossible.

So she and her husband, Keiichiro, devoted themselves to getting the transplant law changed. They were in parliament when the result was announced, and they both broke down.

Keiichiro told us Soutaro had shown them the path, and he was constantly with them.

As for Hiroki, he is in a hospital in New York, where he has had the transplant operation. Though the recovery is filled with risks, his parents say he is doing well.

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Filed under: Asia • Health • Organ donors


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JD   July 17th, 2009 711 GMT

What this story fails to mention is the very strong opposition this bill has faced, and which the new law will continue to face. The Japanese are still very reluctanct to accept brain death as actually being dead – especially in regards to children – and the law requires that families consent to the donation of organs. Given widespread attitudes in Japan regarding what constitutes life and death, it's likely that many Japanese children will still need to seek organ transplants in US hospitals and from US donors.

With that said, this is still an important first step toward saving lives.

Jacki   July 17th, 2009 757 GMT

I do feel sorry for other countries not having a more open organ donation system, but I don't agree that the US or other countries should bring their families here and use our organ donations that we've signed for on our driver's licenses. I'm sure there are many that don't agree with my thoughts, but our rules in the US for organ donations, capital punishment etc.... other countries can't pick and choose which one of our policies they like and benefit from it. Even if you have an opinion on capital punishment, who ever comes to the US for a murder trial knowing we have capital punishment? Only our good things others want. It makes me think twice about being an organ donor. There's no reciprocity here...

Keith, Spain   July 17th, 2009 1112 GMT

Very sensitively written article, with deep feeling. Am glad that such a country as Japan can begin to take a step in the right direction.
As often happens in many countries, local religions and local customs impede the use of advances, especially in medecine, unfortunately. It is difficult to cross those sociological barriers. However, at last, some African countries are beginning to move against that horrendous custom of practising femal ablations on young girls.
I can remember here when Jehova Witnesses refused to let their children have simple blood-transfusions to save their lives. Several children died causing a great uproar in society – the first organ-donating country in the world.........

JD   July 17th, 2009 1241 GMT

@Jacki
Just for the record... No one "bring[s the] families" to the US. Prior to the new law in Japan, the US was the ONLY option for Japanese children needing transplants – and it is an option the familes pay through the nose for (often 2-4 times what would be charged for a US family). But don't mistake that premium price as "buying" organs – organ donations are still assigned on a need basis before any other considerations (the higher price is purely for the medical services – e.g. hospital stay and surgery).

And when talking about "our organ donations," please think about this... Did you sign on the dotted line to save a life(lives) – or did you sign out of some sense of patriotism? If the answer is the former, it shouldn't matter who receives the organ(s) as long as they're in need.

Amos Davies   July 17th, 2009 1341 GMT

I came across the story of the Nakazawa family and hot tears ran my cheek. I shared their grief. It’s a pity how the errors of bureaucracy and politicians lead to innocent lost of lives.

Sylver   July 17th, 2009 1400 GMT

Someone has never had their child die of hypertrophic cardiomyopathy. Been there, done that and it is Hell, to put it mildly. Not only have I already lost one sweetheart of a son to the disease, I lost an older, much loved brother and an uncle. My younger son was diagnosed with it some twelve years ago. My youngest brother and a nephew have been recently diagnosed with it. Fortunately research is making progress. Not everyone will need a heart transplant. But those who do, no matter what their nationality is, should not be denied the chance to live. Such xenophobia in the commentary above reflects poorly on that person's humanity. My younger son may never need the transplant. He has undergone a new procedure that has eradicated the arrhythmia that was causing the speeded up deterioration of his heart. We won't know for some time how successful this procedure is but we have hope for the long term. But if any child should need a transplantation could you, with a clear conscious, deny that child the chance for life? What if it was your child – and your only hope was that some "foreigner's" family were willing to sign the papers that would prolong your child's life. Would you turn them down and say I don't want a foreigner's heart beating in my baby's body?

M   July 17th, 2009 1510 GMT

Very interesting points Jacki. I agree with you on certain points. But not all. You say that it is unfair that Americans might have to wait longer for organs because of a foreign person also being on the list and that this fact makes you think twice about being an organ donor?

Maybe this is just me. But when I signed up to be an organ donor, I didn't sign up only because I was going to save American lives. I signed up because, God forbid, if I was ever in a position that my organs would no longer benefit me, maybe they could still benefit someone else. I didn't think, I hope they could benefit another American....If I was ever in a position to donate my organs, I wouldn't really care who got them, American or otherwise, as long as it helped save a life.

April   July 17th, 2009 1611 GMT

Jacki, I don't agree with your argument. Comparing organ donation and capital punishment makes no sense. A person doesn't really have the choice about what country they want to be tried in. If they commit a crime in the US then they are charged in the US, and the trial is carried out in the US. If they commit a crime in Spain, the trial is in Spain. I am an organ donor and will continue to be an organ donor. I choose to be an organ donor with the hope that one day that decision will help to save another person's life. It shouldn't matter where that person is from.

Bob   July 17th, 2009 2050 GMT

And I bet you give a gift with the expectation of receiving one in return. This world is a far cry from being perfect, and a child is as close to perfect as we will ever become. They have nothing to do with the laws they fall under, or imaginary boundary lines we adults draw on maps. I am glad that with such an imperfect society that the laws vary from one country to another. Maybe for some, it can offer an avenue of relief in providing a needed escape from societies dementia. If you are concerned about the reciprocity of it however, the operations do bring money into your economy. Hail the almighty dollar.
I understand that laws surrounding such issues are tricky and controversial, but I think they would be less so if we had a justice system instead of a legal system.

yok   July 19th, 2009 1033 GMT

I always admire Japanese people for their attempt in achieving anything they set their minds on. What a pure spirit. I hope this law changing can help those families with unfortunate member.

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