Changing Minds about Pediatric Organ Transplants

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Changing Minds about Pediatric Organ Transplants

This past July, 2008, Megumi Aihara, a six year-old girl suffering from severe
heart disease, had a cardiac transplant operation in the United States. Her parents raised
funds to get enough money for the operation, and successfully collected 110 million yen(“First grader Midori,” 2008). This is very delightful news, but this news has clearly
posed a serious question to us all. That is: how many families can afford as much as ahundred million yen for an operation for their child?
Taking the specific example of heart transplants, according to the Tokyo
Shimbun, from 1997 to mid-2002, in a group of 41 children, 22 were successfully able
to receive cardiac transplantation operations in foreign countries. However, 19 passed
away either while preparing to travel abroad or after they went abroad (as cited in Onda,2004). Since it costs an enormous amount of money for the operation, most of thefortunate patients, like Megumi Aihara, have to collect money by conducting
fundraising campaigns.

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Diagram 1Diagram 1 above shows that, although the overall numbers are relatively small,there are children who are in great need of special care at home here in Japan. This isclearly a serious problem we have to address. It is not only a financial problem. Most of
those children are in severe condition, so they do not have time to wait for their parents
to collect money on the streets. The average life expectancy of such children is 6
months, and their one year survival rate is only 32.5% (as cited in Onda, 2004).
Therefore, there are some cases where the children become too ill to travel at all.
Also, the great costs involved lead to unfairness in medical treatment. Children
whose parents can afford to pay the cost can undergo the transplantation operation. But
how will children of less wealthy families fare? It is possible that they will not be able

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to have the operation because their parents cannot collect sufficient money despite theirbest fundraising efforts. In this case, the gap between rich and poor is causing theinjustice.
Thinking about these problems, one naturally wonders why those children
cannot pursue organ transplantation operations in Japan. Despite the availability of thenecessary technology and expertise, the Organ Transplant Law prohibits brain-deadchildren under fifteen from being organ transplant donors (as cited in “Revising theOrgan,” 2006). This means that a child in need might possibly receive an organ from anadult donor, but in the case of cardiac transplants, this has only happened twice (due tothe size of the heart needed) (Bagheri, n.d.; Onda, 2004).
There are several reasons why organ transplantation from brain-dead children
is prohibited. The first reason is the difficulty in judging brain death. The domestic
criteria for brain death, called the Takeuchi Kijun, is not adaptive to children under six
years old (“Zouki no ishoku,” 2000). More data is needed to either broaden the Takeuchi
Kijun or to introduce a specific version just for children. Also, Dr. Sugimoto (2003) has
pointed out that the pathophysiology of brain death remains to be clarified in children
because children can react differently than adults to trauma that leaves their heart
uninjured.

Changing Minds about Pediatric Organ Transplants

4Another reason why the Organ Transplant Law bans children from being
donors is because of the problem of child abuse. According to research by the Ministryof Health, Labour and Welfare, there are cases of children under six who have become
brain-dead because of abuse from their parents (as cited in Onda, 2004). Also, according
to other research, 10-40% of all children with head injuries are suspected of being
victims of abuse (as cited in Onda, 2004). Given the existence of child abuse, organ
donation with only the permission of parents would be a problem in many surgical cases.
So, as the Japan Pediatric Society (2003) and the Japanese Society of Child HealthNursing (2004) argue, it would cause a serious problem if organ transplantation fromchildren is allowed without first making a solid system for distinguishing child abusebrain-death cases from non-child abuse brain-death cases.
Another obstacle Japan suffers from is a lack of consensus among doctors andlay people about the need for organ transplant in general. For example, in Christiancountries like the United Kingdom, organ donation is accepted as a natural duty. In fact,
the Church of England has declared organ donation to be a Christian duty (as cited in“Organ donation a Christian,” 2007). Also, two-thirds of the people surveyed by theBritish Medical Association said the UK should move to an opt-out system, meaningthat all citizens are automatically organ donors unless they specifically request not to beChanging Minds about Pediatric Organ Transplants

5（as cited in “Most back opt-out organ donation,” 2007）.
On the other hand, in Japan, organ transplantation from brain-dead people inparticular is not popular. According to a research report by the Japan Organ Transplant
Network, only 76 brain-dead people became donors after the Organ Transplant Law wasput into force in 1997 (“Data about organ transplant,” 2008). Diagram 2 (below) gives agraphical representation of these statistics.

Diagram 2
These data mean that only about 7 brain-dead adults become donors each year onaverage, while 3000-4000 people are estimated to meet the medical definition of brain
death each year (Shimazaki, n.d.) Why can’t organ transplants attain social acceptanceand consensus? Alireza Bagheri (n.d.) pointed out that, “the Japanese . . . beliefs

Changing Minds about Pediatric Organ Transplants

6towards life and death had a great role to shape [attitudes].” In fact, some experts havepointed out that traditional Buddhist and Shinto teachings influence Japanese views on
death. Dr. Brannigan has argued that many Japanese believe body and soul rest side byside and thus Japanese do not want to tamper with the bodies of deceased loved ones (ascited in Wicks, 2000). That is not to say that the bodies of the deceased people cannot
be altered what so ever. Cremation, for example, is common practice in Japan. However,removing part of a body, especially in a surgical procedure behind closed doors, isunacceptable (or just alarming) to many Japanese people.
The cultural issues are, undoubtedly, affecting the current debate on organtransplantation from brain-dead children. Clearly a new proposal is necessary to better
inform the public, to revise current laws, and to bring doctors together in a neworganization. We do not have any time to waste. This past May (2008), theTransplantation Society adopted the Declaration of Istanbul on Organ Trafficking andTransplant Tourism, which states that, “Countries . . . should strive to achieveself-sufficiency in organ donation . . . .” (The Transplantation Society, 2008). Inaddition, Dr. Luc Nuel, in charge of transplantation at the WHO, warned members of
the Japanese Diet to change the present condition when he came to Japan this June (ascited in Today’s feature, 2008).

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As a solution, firstly, organ donation from brain-dead children under fifteen
should be allowed. It is true that there are many medical, ethical, and cultural problems,
but the Japanese government should undertake to help children waiting for organtransplants. The advantages of introducing child organ donation clearly outweigh theproblems. I believe that these problems can be mitigated by establishing a solid systemfor pediatric organ transplant based on the idea from a proposal by Masahiro Morioka
and Tateo Sugimoto (Sugimoto, 2003). They have proposed a revision to the current law.
Their proposal consists of two variants, and I strongly agree with their plan for
permitting organ removals from children over five. Ideally, children of any age would
be eligible organ donors, not just those over five. However, Japan just does not seem
ready for this degree of medical change. My proposal is a compromise which hopefully
will eventually lead to the ideal solution.
One of the features of Morioka and Sugimoto’s proposal is the requirement ofdonor’s consent via a prior declaration plus the prior consent of persons in parentalauthority. This requirement is similar to the current law for adults, but it is also inaccordance with the UN Convention on the Right of the Child (Office of the United
Nations High Commissioner for Human Rights, n.d.).
The second part of my proposal is to establish an organization called the ChildChanging Minds about Pediatric Organ Transplants

8Organ Transplantation Management Organization (COTMO) that will register andrecord organ donors. Currently, the Japan Organ Transplant Network (JOTN) is working
as the sole organ transplant network. However, considering the several controversial
issues of organ transplant from children, it is necessary to distinguish the current
network from the COTMO network.
As mentioned previously, where size is concerned, usually organs fromchildren should be given to children (in very few cases, adult organs may be given tochildren and vice versa, depending on the size of the adult). Therefore, by establishing a
new association which deals only with child organs, it would be smoother to locate
organs before an operation.
However, this new organization (COTMO) and the current JOTN should work
together seamlessly as a team especially for those times when a child organ fits an adultpatient. Also, there will be certain ages that overlap between the two organizations (forexample, older teenagers and young adults).

Changing Minds about Pediatric Organ Transplants

9Sharing
Information

Diagram 3

Relationship between COTMO and JOTN

In my proposal, COTMO will work not only as a network of child organs but
an organization which deals with all aspects of child organ transplantation.
First, COTMO would provide pediatric transplant coordinator training.
Currently, there are about twenty transplant coordinators working for the JOTN.
However, the specialty of the coordinators is related to the non-surgical aspects of organtransplant from adults, not children. Therefore, it would be urgent to educate new childorgan transplant coordinators. The coordinators should have special national licenses.
By the same token, pediatric implant surgeons are necessary. The organization
should accredit the doctors, and only the accredited doctors should be allowed toundertake child organ transplantation operations. The merit of introducing this system isthat these doctors would have specialized knowledge and experience in all aspects ofpediatric organ transplantation. For example, these accredited doctors would knowenough about child abuse, so that they can distinguish between cases of child abuse andChanging Minds about Pediatric Organ Transplants

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other cases of brain death. Thinking about the example of the United States, theAmerican Academy of Pediatrics states:
The medical and forensic investigation of the death of a child attributable totrauma (unintentional or resulting from abuse), SIDS, poisonings, etc, presents
unique issues related to organ procurement. Close cooperation between theforensic system, transplant team, treating physicians, and OPO allows . . .
successful organ procurement (The American Academy of Pediatrics, 2002).
This quote shows that, although challenging, child organ transplantation can work. It
takes cooperation and close oversight by accredited professionals. My proposal, though,does not advocate organ donation from abused children.

Diagram 4 Image of the ideal COTMO network

Changing Minds about Pediatric Organ Transplants

11In addition to providing training, COTMO should create a steering committee
to discuss ethical, medical and cultural aspects of organ transplantation. It will consistof COTMO members including pediatricians, surgeons, COTMO coordinators, ethicists
and possibly lawyers. As new discoveries and developments occur concerning pediatrictransplants, this committee will be the forum for sharing that information and deciding
how to publicize it.
A lot of progress needs to be made in organ donation education in Japan.
According to research by the Cabinet Office, only 8 % of the people surveyed had donorcards (as cited in Today’s feature, 2008). This number is far too small, but shows a good
opportunity for improvement. This is how we should approach the pediatric organtransplant issue. There is good opportunity for improvement in every area. It is
important to remain positive about the progress that can be made. Only criticizing thecurrent system will be counter-productive. Just like when a pediatrician treats a child,bedside manner and attitude make the difference between a hospital with a waiting list
and a hospital with an empty lobby.

Changing Minds about Pediatric Organ Transplants

12Reference
The American Academy of Pediatrics. (2002). Policy Statement: Pediatric Organ
Donation and Transplantation. Retrieved November 10, 2009, fromhttp://aappolicy.aappublications.org/cgi/reprint/pediatrics;109/5/982.pdf
Bagheri, A. (n.d.). Can the Japan organ transplantation law promote organ procurementfrom the brain dead? Eubios Ethics Institute. Retrieved October 30, 2008, fromhttp://www.eubios.info/ABC4/abc4133.htm
Ishoku ni kansuru deita. [Data about organ transplant]. (2008, October 24). Nihon Zouki
Ishoku Netto. [Japan Organ Transplant Network]. Retrieved October 29, 2008,
from http://www.jotnw.or.jp/datafile/offer_brain.html
Kyou no tokushuu: Zouki ishoku [Today’s feature: Organ transplant]. (2008, September18). [TV news program]. In News real time. Tokyo: Nihon Television.
Most back opt-out organ donation. (2007, October 18). BBC News. Retrieved October
29, 2008, from http://news.bbc.co.uk/2/hi/health/7051235.stm
Nihon Shonika Gakkai. [Japan Pediatric Society]. (2003). Shoni noushi zouki ishoku wa
dou-arubekika. [What the ideal practice of pediatric organ transplantation frombrain-dead donors should be]. Retrieved October 30, 2008, from http://www.jpeds.or.jp/saisin.html#50

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Nihon Shoni Kango Gakkai. [Japanese Society of Child Health Nursing]. (2004). ZoukiIshoku hou kaisei ni kansuru nihon shoni kango gakkai no kenkai. [The Opinionof Japanese society on child health nursing and the revision of the organ transplantlaw]. Retrieved November 9, 2008, from http://jschn.umin.ac.jp/kennkai.pdf
Office of the United Nations High Commissioner for Human Rights. (n.d.). Convention
on the Rights of the Child. Retrieved October 30, 2008, from http://www2.ohchr.org/english/law/crc.htm
Onda, H. (2004). Kodomo no noushi to zoukiishoku. [Pediatric brain death andorgan transplant]. Kokuritsu kokkai toshokan. [National Diet Library]. Retrieved
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Organ donation a Christian duty. (2007, Monday 8). BBC News. Retrieved October 30,
2008, from http://news.bbc.co.uk/2/hi/health/7034487.stm
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ed20060517a1.html
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Sho-iti no Midori-than sinzou ishoku seikou: Nyuuin nagabiki bokin yobikake. [Firstgrader Midori successfully undergoes cardiac transplant: More financial
contributions are required because of prolonged hospitalization]. (2008, July 13).
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life/trend/080713/trd0807132253009-n1.htm
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The Transplantation Society. (2008). The Declaration of Istanbul on Organ Trafficking
and Transplant Tourism. Retrieved October 30, 2008, from http://www.prnewswire.com/mnr/transplantationsociety/33914/docs/
Wicks, N. M. (2000). Brain Death and Transplantation: The Japanese. Medscape Today.
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33914-Declaration_of_Iｓtanbul-Lancet.pdf
Zouki no ishoku ni kansuru houritu shikou kisoku. [Enforcement regulation of organtransplantation law]. (2000). Hourei deita teikyou shisutemu [Legal data system].
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15=H09F03601000078&H_RYAKU=1&H_CTG=1&H_YOMI_GUN=1&H_CTG_GUN=1