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Parents reluctant to donate organs of brain-dead children

18 Comments

In 2010, the Organ Transplant Law was amended to allow the use of organs of children under 15 who have been declared brain dead. That brought Japan in line with World Health Organization guidelines, but in the two years since, only two Japanese children in need of organs have benefited.

Is brain death really death? Medical authorities say it is, but parents see their children continuing to exhibit certain vital signs after brain death and hope for a miracle. Meanwhile, children whose lives could be saved die for lack of suitable organs. Josei Jishin (Oct 30) tells the story of one Osaka family who lived the agonizing issue on both sides.

Yasuteru Morimoto was born in February 1993 with a bad heart. His disease was a rare one, affecting one in tens of thousands. There was no cure. A transplant was not an immediate necessity, doctors told her, but it was a distant one, and the family should plan accordingly. Child transplants were not done in Japan; the very subject was taboo. Going abroad was the only option, involving enormous expense and a waiting list some seven years long.

By the time Yasuteru was in third grade, he was weakening noticeably, going to school mornings only. At the hospital he went to for treatment, he made friends with a boy who had the same disease. One day the boy wasn’t there. “He’s left us,” the doctor explained.

Yasuteru understood immediately. “He’s dead, isn’t he?”

One evening after dinner, Yasuteru’s mother Yoko was in the kitchen washing the dishes. The boy and his father were in the living room and Yoko overheard a haunting conversation. “What if somebody needed your organs?” Yasuteru’s father Takashi asked. Yoko’s heart skipped a beat. Was this the way to talk to a child for whom the issue was all too real? But Yasuteru answered without hesitating: “I’d give!” He’d evidently given the matter a good deal of thought.

Two years passed. The situation was growing urgent. In February 2004, after much planning, saving and fund-raising – total cost: 40 million yen – the family traveled to Germany. There Yasuteru would receive a new heart. They had barely settled in before Yasuteru’s heart stopped abruptly. He was dead – brain dead. They were too late. If they’d arrived two months earlier, he might have been saved. If child transplants had been possible in Japan, he almost certainly would have been.

Recalling Yasuteru’s talk with his father three years earlier, the Morimotos made their decision. Yasuteru was gone, but his organs might save other lives. His pancreas and kidneys were claimed immediately; his corneas went to an eye bank. “He didn’t live in vain,” Yoko remembers thinking to herself as she heard the helicopter bearing the organs taking off from the hospital airfield.

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18 Comments
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There have been several (if not countless) well documented cases of children being declared brain dead by doctors and then recovering, in many cases to full awareness and consciousness.

Medical science is nowhere near perfect and I understand parents who err on the side of caution and hope for a recovery, which in many cases, especially for children, will come.

1 ( +4 / -4 )

NeverSubmitOCT. 27, 2012 - 06:46AM JST There have been several (if not countless) well documented cases of children being declared brain dead by doctors and then recovering, in many cases to full awareness and consciousness.

Medical science is nowhere near perfect and I understand parents who err on the side of caution and hope for a recovery, which in many cases, especially for children, will come.

Very well said. Yes it is very true, Medical science is nowhere perfect. If children are being declared brain dead by doctors around the world, only to recover again to full consciousness in some cases, that sends a very clear message that declaring one brain dead is NOT ACTUALLY DEAD.

0 ( +3 / -3 )

I would wish no one to be in the position of parents who have to admit that their child is brain dead and let go of him and her. It is natural to hang on to a child when all is hopeless, hoping against hope. A poet wrote of her dead daughter that she read that certain monkey mothers carry their dead children on their backs and that she would be willing to carry her dead daughter on her own back forever.

However horrid death is somehow near death is worse. With death there is at least closure. With near death there is no closure until the loved ones decide it is time to pull the plug.

I am hoping that stem cell research can save people like the child named in this article.

6 ( +6 / -0 )

I totally understand the reluctance of anyone to accept brain death as death when it affects a loved one. How much more as a parent. I'm sure from reading this story, though, that this young boy was already very weak when he went to Germany, and so perhaps it was slightly less agonizing to decide. Kudos to the father for raising the issue with his son. It doesn't surprise me what his son's response was. Young children who suffer serious illnesses are often mature and brave way beyond their years, and are a model of generosity for all of us. To have had that conversation with his son must have helped both parents with this terrible decision.

From my own experience with my husband's kidney failure and 13-year wait for a transplant, I know that you live in constant awareness of how close to the edge your loved one is living, and so inside, you do prepare yourself a thousand times over for that moment. I would have made the same decision about my husband had he died waiting, and I myself as an adult make sure that everyone around me knows my wish to be a donor, so they find it easier to say yes to donation, and as important, to respect my decision.

Whatever the law might say about how old you need to be to make such a decision, I fully believe that Yasuteru's decision to be a donor was 100% his own, 100% firm, and that his parents did the right thing by him. From what this story says, he had already reached that decision before his father had the conversation with him. I hope this, and knowing Yasuteru has helped several others, has given them some comfort in their grief.

6 ( +8 / -2 )

Not sure a child is mature enough to make a reasoned decision on this issue.

Want a doughnut? Sure!

Want some juice? Sure!

Want your body to be harvested for organs if a doctor guesses that you might not recover even though you stand a good chance of recovering? Sure!

With smoking, intoxicants, voting, joining the army and sex the age of maturity is generally considered to be about 18 or so in most countries. It should be the same for organ harvesting, which is a life and death issue.

-10 ( +3 / -14 )

There have been several (if not countless) well documented cases of children being declared brain dead by doctors and then recovering, in many cases to full awareness and consciousness.

Perhaps people have been declared dead in cases of hypothermia, but no one comes back after full neurological testing is all positive for brain death...a portion of the testing includes-

Pupils in mid position, 4mm or more dilated, unresponsive to light

No eye motion, and no eye position change with testing of occulovestabular reflex (30ml of ice water instilled into ears to contact tympanic membrane)

No blinking when cornea is touched with cotton

No gagging when trachea is stimulated

No brain function detected on 16 or 18-channel electroencephalography

There is other testing, apnea testing with removal of the ventilator (after saturation with 100% oxygen). If they don't breath w/o the ventilator despite blood gas changes, they are brain dead.

It's not like a drama where they just check the pulse and confirm death. All brain reflexes are tested.

7 ( +10 / -3 )

'a portion of the criteria'

0 ( +1 / -1 )

I don't believe this is something that people can make judgement on unless they have been faced as parents with the situation of being asked to donate their brain dead child's organs. Even then every parent would hold different views on the matter. Because this is your child and even if there was just the tiniest bit of hope you would want to keep hold of it.

0 ( +4 / -4 )

even though you stand a good chance of recovering

Rubbish. There may have been a minuscule handful of cases where people have recovered after being mistakenly declared brain dead. There are hundreds of cases where people die for a lack of transplants.

8 ( +10 / -2 )

You can't fudge it. It has to be done with the family present. Who is going to let a doctor take organs out of someone who is responding?

1 ( +3 / -2 )

Of course it's scary to admit that your child has a 99.99999999999% chance of never waking up. But that's the reality with brain dead people - they are indeed essentially dead. It's sad and horrible, but the fact is that there are also tons of children out there who will die if they don't get organ transplants. I hope I'm never in the position to decide, but I respect the parents that are willing to let go and save another kid.

9 ( +10 / -1 )

It's got to be unthinkable for a parent to give up and turn off the ventilator. But there's some real benefit in letting go and allowing the child's organs to be donated to save other lives. It's a small positive in the shadow of a huge negative, but it's something.

3 ( +5 / -2 )

If my kid was in the situation of either being left brain dead on a ventilator - or being removed and giving the gift of life to one or more kids I'd do it.

2 ( +3 / -1 )

I am sceptical about organ donation, mainly because I don't fully believe that doctors are completely free from corruption.

When it came to a child who needs an organ, most parents would do anything within their power to help their own child (myself included) get that heart or liver, even if it was illegal.

Aside from the hope that the child in question will somehow miraculously recover, there are many reports that suggest that even the brain dead feel pain when their "organs" are removed for donation. Many countries will now administer anaesthetic to relieve pain before surgery to help with the distress of those medical professionals in the operating theatre ... despite the fact that if they are brain dead, they should not feel pain.

On that basis alone, it would be a very hard decision for me to let my child donate organs. The fact that a childs very last few seconds could be filled with pain as opposed to slipping quietly away, is heartbreaking for any parent to contemplate.

As another poster said, medical science is nowhere near perfect.

-1 ( +2 / -3 )

i would sooo donate my organs to others in need of them or my child/childrens organs to others. why the hell would you not?! (-_- #)

1 ( +1 / -0 )

What frustrates me about the entire situation above is that if the religious right wing hadn't interfered in stem cell research this little boy would still be alive. Stopping stem cell research didn't stop abortions, and even with the delay we've already moved past the point where we need embryonic stem cells. If the religious nutters hadn't interfered then stem cell research would be at a point today where the doctors would merely have filtered through Yasuteru's blood, extracted naturally occurring stem cells, taken a small portion of heart tissue, and then cloned him a new heart that was a 100% match for him.

There was no reason for this child to die, and the religious right wing needs to stand up and take responsibility for all the death and misery they've caused in the name of their so-called "loving" God. Yasuteru's case isn't an isolated one either, there are literally millions of cases like this every year, and the benefits of stem cell research (which now no longer require ANY ethically questionable materials) are immense... yet the religious nutters continue to try and block it.

No more dead children for God.

1 ( +4 / -3 )

Frungy: I'm with you %130 on this. Want to believe in a cosmic space-zombie? Fine, but keep the rest of society out of it

Don't endanger my families heath because of your own absurd indoctrination in the belief that taking away part of MY flesh is robbing me of my soul.

1 ( +1 / -0 )

Science, medicine, politics--any aspect of human society that requires rational, objective judgement--must by this definition be secularised. Faith is personal, private and detrimental to the advancement of the species in anything but a spiritual regard.

I am not saying that there is no merit in exploring or enhancing one's spirit, but spiritualism/religion doesn't aim to preserve life; in nearly all cases, religious or spiritual beliefs lessen the emphasis on this life and help individuals accept suffering and death as necessary steps along a finite path to something better than this life.

Spiritual people will not see the good in circumventing traditional ethical restrictions on scientific [esp. medical] research for the sake of preserving life because, in their eyes, this corporeal life is insignificant. It is not for a spiritual person to stand in the way of such research when it is in the interests of all the people who do value their material survival above everything else, which is just about everyone who is remotely doubtful or entirely critical of ideas like an afterlife, god, heaven, reincarnation, or of any kind of psychological/conscious existence post-mortem.

Returning to the matter at hand, if parents believe their child may make a miraculous recovery, they must believe in miracles. If they believe in miracles, do they not also believe in other spiritual concepts like the immortality of the soul? Do they not believe that, if their child's physical body is so utterly impaired, to keep the soul bound to it is simply imprisoning it and perpetuating its suffering?

If the parents do not believe in miracles, but rather in medical fact and pragmatism, the rational choice is to give the organs to someone with a higher chance of actually surviving as a functional human being and either having another child after mourning their loss or taking solace in the fact that their child's death gave life to another.

The reason why doctors are trained to be objective is in order to make ethically difficult decisions. The reason why doctors are usually not the attending physician to their family members is to avoid subjective dilemmas caused by emotional distress. Subjectivity compromises good decision-making and is often characterised by irrational thought.

The biggest problem here is that if the problem in the eyes of society is the reluctance of parents to sacrifice their child's minuscule chance for life, then there must be an implicit obligation to make such a sacrifice and this would make one wonder: by this logic, should we not simply breed humans by a method of cloning, keep them in a state of perpetual hibernation and sensory deprivation, and simply harvest them for the organs we require? They would not be individuals, they would have no parents who might be attached to them, there can be no conflicts of interest and there could be an enormous surplus of organ donations. Thousands of lives would be saved and without the sacrifice of anyone who could be considered truly alive or cognizant. But why should these clones have fewer rights than normal humans? Should we not also breed a working class and all live like kings?

Since this is obviously a morally horrific concept, is it truly right to think of brain-dead children in the same way? As husks just waiting to be harvested by people with a better shot at life?

0 ( +0 / -0 )

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