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''Children cannot get heart transplants in Russia''

Published: 13 May, 2009, 09:39

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TAGS: Health, Russia, Human rights


Russian law says that a person can become a donor only if their brain death is ascertained according to accepted medical criteria, but it also says those criteria cannot be applied to minors.

Confirming brain death in children is essential for those wishing to perform any transplant. Without this, Russian parents, whose children are in desperate need a heart transplant, are facing a dilemma. Parents have no choice but to travel abroad to save their child.

Albina Khismatullina, whose son Linar is one of a very few children in Russia who was lucky enough to get a heart transplant in Italy says, “I remember doctors from Russia's main cardiology center telling me Linar could die within two months, and the only way to save him was to send him abroad. And they helped us do it.”

In Russia children cannot become donors, in spite the fact that around a thousand children in the country now desperately need a new heart, and their chances of survival are scarce. In addition, the heart is the only organ which cannot be transplanted to a child from an adult.

The head of the country's biggest cardiology centre says an amendment to the law is very much needed.

“I honestly don't understand why it takes officials so long to give a green light to children’s organ donorship,” shares top Russian cardiologist Leo Bokeria. “The instructions which let doctors certify a child's brain death exist in most countries of the civilized world. There's no real alternative to a heart transplant.”

Surgery of this kind in the US or in Europe costs hundreds of thousands of dollars, which the majority of Russian parents simply cannot afford.

Doctors say some of the operations they perform in Russia are much more complex than a child’s heart transplant. They say they're ready to start doing it tomorrow if the necessary law is adopted, but for now their hands are tied.

Many fear, however, that if a law is approved, the donation of children’s organs could be exploited.

“First of all we need to think about the donors,” explains critical care specialist Aleksey Starchenko. “I think their rights would not be safe if donorship is allowed here. How can parents be sure that doctors did everything to save their child? What if corruption creeps in?”

Not many people know more about transplanting hearts than Russia's chief Heart Surgeon Leo Bokeria. Bokeria performs up to six operations a day, and is considered one of the world's top experts. RT asked him how he gears up for his work.

“First of all, I know the outcome of similar operations in global practice and I know the results that my colleagues and I have achieved previously. As for the mood before an operation, it can be very different. For example, my third surgery today looked simple at first. It was an eight-month-old infant with a severe case of pulmonary artery stenosis.

Technically, this is a very simple operation. However, in the case of that specific kid, it was very difficult. I was more anxious before that operation than I was before the far more difficult large vessel transposition operations. Imagine that a child is born whose aorta goes out the right ventricle and pulmonary arterial goes out the left one, while it should be exactly the opposite. You must swap the two major vessels, relocate coronary vessels, and so on. While only two or three people in Russia can do such operations, it is very simple in that you can see everything: take this here and put it there, and so on.

Therefore, my inner feeling is mostly determined by my skills and experience. However, there is another situation. A very close friend of mine has a grandson with a congenital heart disease. The night before the operation, the father of the kid that is my friend’s son called me at midnight and demanded that I give a 100% guarantee that nothing wrong happens to the kid. Of course, I assured him that everything was going to be all right. In the end, he just pressed me into giving him a 100% guarantee. Naturally, I felt awkward preparing for the operation next day. I always feel uncomfortable when forced to say what I have no right to say, because there is no way a doctor can give you a 100% guarantee.”

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“Child donorship is a matter of public trust”

Although children’s organ donation could improve the situation, Russia still does not have enough transplantologists, a national system with public control or a legal basis for children’s heart donorship.

Count Cash May 13, 2009, 19:09
0

It is a tragedy, to see a child in suffering, or at worst passing away, when techniques exist to save them. We would all love, for them to get better. However, we need be careful here. In the west, there has been a rush to extract organs, either for profit, or as a result of playing God, in deciding that the recipients life is of more worth than the donor. We don't want to go down this path in Russia. In terms of profit, we all know, we have a huge issue with corruption. Without stern controls, this would turn us into body snatchers. We therefore need absolute, strongly policed protocols, driving all that can be done, to save the potential donors life, without any regard to a recipents condition. The standard needs to be absolute, with strong criminal sanction, for breach. Only when the donor child dies naturally, should the recipient, based on parental consent be allowed to receive the donors organ. This does have an affect on the availability of organs, there is no doubt about it, however, we need be absolute here. Being absolute, will nulify any notion of becoming God and also stamp on corruptive forces. It will leave a problem, but this problem should be seen as a force, driving innovation to create transplant alternatives. This is an opportunity for Russia. Just going down the slippery slope to playing God is not the answer, for any dying child, We are not God, so leave it at that. But we are people, who can overcome problems in the correct way, without always taking the easy way out through liberal relativism.