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. Last Updated: 07/27/2016

Transplant Rules to Let Children Stay Home

For MTFaryusa Kostina holding Sasha. The boy received a new liver in Belgium.
Fayrusa Kostina, a nurse from Chelyabinsk, has not explained to her son why his father went to prison. She never told anyone before she brought her son Sasha, now 6, to the St. Luc University Clinic in Brussels, for a liver transplant.

But on Friday, she was finally ready to tell how her husband had tried to hold up an armored car in a rash attempt to secure money for their boy's operation. She spoke because health authorities confirmed on Friday that they were finally legalizing the operation that saved her son's life -- a child-to-child organ transplant.

A spokeswoman for the Health and Social Development Ministry said Friday that guidelines were being prepared that would allow the transplants. "The guidelines are now being discussed by doctors and will be implemented in several months," the spokeswoman said.

Kostina's son is one of hundreds of children born every year with unhealthy organs -- tantamount to a death sentence without a transplant operation. Olga Sharapova, the head of the Department of Children and Maternity Protection, said about 200 children need kidney transplants and 100 need liver transplants each year, RIA-Novosti reported.

Kostina and her husband learned that something was wrong with their child three weeks after he was born in 2001 in Chelyabinsk -- he celebrated his sixth birthday on Saturday. They saw bruises on his back, and his gums were bleeding. Doctors were unable to diagnose what was wrong until an operation uncovered biliary atresia, a rare disease that affects the liver.

The Kostins were told their son had no gall-ducts and would not live more than one year. Only a liver transplant could save him.

Kostina, speaking by telephone from a hotel in Belgium, where she and her son were on a medical checkup, said no one in Russia in 2001 was able to perform an organ transplant for small children.

Doctors have been transplanting organs for adults since 1969, said Dr. Sergei Gautier, head of the Transplant Department at the Russian Science Center of Surgery -- the only place in the country that performs adult-to-child transplants today. While there are hundreds of liver transplants performed for adults each year -- compared with about 5,000 transplants in the United States -- only a few are performed on young children. And those are only allowed under current legislation from adult relatives.

"I do about 40 liver transplants from relatives of the donor to infants and small children per year," said Gautier, the lone surgeon who has performed them in Russia for the past three years.

Kostina realized in 2001 that, left untreated, her child would die. Her last thread of hope was to travel abroad to a country where child-to-child transplants were performed. She and her husband learned that Belgian doctors excelled in child transplants, but when they saw the price -- 85,000 euros ($117,200) -- their hope vanished.

Raising such a sum in Chelyabinsk, where her salary as a nurse was about 3,800 rubles ($150) per month and her husband's salary as a manager in a furniture company was about 8,900 rubles ($350), was impossible.

Her husband turned to city officials for help. He received about 10,200 rubles ($400) and was advised to hand the child over to the state.

He then searched for job opportunities abroad, but to no avail. He also contacted various charities, but the amount of money needed was just too large.

"Actually, it can take years to raise the money, and some children die first," said Viktoria Likhtina, head of a charity that raises money for transplants and has advised Kostina.

She told of a young girl, Nastya Rogalevich, who needed a liver transplant and died in May 2005 in the intensive care unit of the Segezha city hospital in Karelia. Friends of the Rogalevich family managed to raise only part of the cost, about 23,000 euros ($31,715), for her transplant operation.

Kostina's husband's arrest in April 2002 came as a shock, as she knew nothing of his last-resort, robbery plan. His unsuccessful attempt to lead a group of his friends in the robbery resulted in a 19-year sentence. "I love my husband, and I know why he did this," Kostina said.

Left alone after his incarceration, she continued to try to save her child. When she learned of Gautier, she brought her son to Moscow. To her dismay, she learned that neither she nor any other relatives could serve as donors. Child-to-child transplants were earlier forbidden due to a lack of guidelines telling doctors when they could declare a child brain dead and suitable to act as a donor.

"It is more difficult to identify the moment a child is rendered brain dead than an adult," the health ministry spokeswoman said.

In an attempt to prevent abuse from doctors, computers will determine whether the child is brain dead under the proposed guidelines, expected to be implemented in the coming months.

Gautier praised the guidelines but said society was not ready to embrace the notion of child-to-child transplants.

"There are too many biases about it. There was a period of real persecution for the doctors who performed transplants," he said.

In a high-profile case in 2003, four doctors were charged with preparing to kill a critically ill patient in Moscow. The four attempted to remove a kidney from a man who was brain dead after a car accident. A court later acquitted them.

Gautier said transplant surgery needed to be further developed and supported in Russia. At present, classes on organ transplants are not taught in medical institutions, creating a lack of specialists.

Kostina's son underwent the transplant operation shortly before his third birthday in Belgium after Likhtina shared their story with "Vremechko," an NTV television program. Viewers donated one-third of the amount needed for the operation, and the health ministry covered the remaining two-thirds.

"If there were domestic child-to-child transplants, then the operations would be free for each child," Likhtina said.

Kostina had not told anyone about her husband's desperate crime before her child received a new liver. But she often tells the boy that his father loves him very much. She said he was excited to spend quality time with his father some day, but did not yet understand that will not be possible until his father's release when he turns 18.