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Sunday, Aug. 28, 2005

Lives in limbo


Staff writer

Emi Nishimura's identity quest began the hard way.

News photo

A 39-year-old mother of three children, Nishimura felt pressured to take care of her aging father when her parents got divorced seven years ago. But then one day when she was telling her mother how unfair the situation felt to her, she was given an explanation she had never expected.

"My mother told me I didn't have to worry about him, because he wasn't my biological father," the petite, soft-spoken woman said in a recent interview. Then her mother told her, Nishimura recalled, that she used to make frequent trips all the way from their hometown in western Japan to a Tokyo hospital to undergo an infertility treatment, and eventually became pregnant -- through the sperm of an anonymous donor.

Not that Nishimura missed the lack of a genetic link to her legal father. In fact, her parents had been separated 30 years prior to their divorce, and her dad had never financially supported the family. She never felt she was loved by her father, she says. So Nishimura's initial reaction to the news was, "Now it makes sense -- we have been strangers."

But the real blow -- and the ensuing desire to track the missing half of her genes -- came when her mother died three years after that, she recalls.

"I feel that I came into this world for the sake of my mother," she said. "After she died, I started wondering if I had a reason to exist any more."

For Nishimura (not her real name), tracing her roots is almost a "mission impossible," as gynecologists across the nation have been tight-lipped about the identity of sperm donors for privacy reasons. All she knows at the moment, Nishimura said, is the name of the hospital where she was conceived. She managed to squeeze this out of her father on a rare occasion they met -- when he came to pray for his deceased ex-wife after her funeral.

The estimated 10,000 or more people known to have been born in Japan through AID (artificial insemination with donors' semen) are in the same boat. They have little clue how to find their donors. What is more appalling, is that there is no knowing how many of them are seeking their donors, or are even aware they were artificially conceived.

"AID has been carried out in complete secrecy," said Satoko Nagaoki, an assistant professor of economics at Keio University who studies support systems for AID children around the world, "and there are very few firsthand accounts from children who were born through this kind of treatment."

Japan's history of using third-party sperm for married couples dates back to 1948, when a doctor at Keio University's obstetrics and gynecology department started planting donor sperm into the wombs of women whose husbands had become afflicted with azoospermia (lack of motile sperm in the semen) due to them having contracted malaria overseas during the war, Nagaoki said.

Over the decades, AID became a popular option, with no legal restrictions attached, for couples desperate for children -- until 1997, when revelations of sperm sales via the Internet forced the Japan Society of Obstetrics and Gynecology to create guidelines, stipulating conditions for couples seeking AID and confirming the premise of anonymity for donors and requiring AID-practicing clinics to register with them. As of October 2004, 23 hospitals and clinics, including Keio University Hospital, were registered.

Donor insemination is a popular option in other countries, where recipients include single women and same-sex couples. Some countries, including Sweden, Switzerland, Austria, the Netherlands and the United Kingdom, as well as three Australian states, have also enacted laws giving the resulting children access to donor identity.

The rigid protection of privacy in Japan, however, has hampered open debate among couples, and in society in general. It has also made it difficult for children to obtain any information about donors, including whether the donors have a genetic disposition that might affect their future health.

Furthermore, Nagaoki points out that there are cultural aspects that have contributed to the secrecy surrounding AID. In this society, with its conformist attitude toward the family, women face enormous pressure to bear children, saving face for their possibly infertile husbands. "There is this mind-set all around the world that a woman isn't complete until she has a child," Nagaoki said. "But men's infertility is an even bigger taboo. If a couple discloses that they are using AID, it automatically means that the husband is responsible for their lack of children. That is such an unbearable admission for men to make. And an overwhelmingly majority of gynecologists are men. They tell their patients: 'You should never discuss AID with anyone, because it hurts a man's pride.' "

But it is exactly this secrecy -- and maybe more than the knowledge of the treatment itself -- that is tormenting children, many of whom learn about their AID history by accident, and often during a family crisis such as the death of their father or their parents' divorce, Nagaoki said.

Mieko Hama, a 26-year-old Tokyo resident, knew nothing about her parents' infertile past until three years ago, when her dad's health deteriorated due to a hereditary disease that eventually killed him. As she fretted about the possibility of suffering from the same disease, her mother confessed that she was conceived with donor sperm, and had no biological relationship with him.

"I was shocked that I was the only person in my family who hadn't been told this," Hama (not her real name) said, adding that she lived with her parents and her father's parents. "And I had wondered why my family has been so dysfunctional. . . . I didn't have a relationship with my father, I have no recollection of my father taking me out. We never really talked, except when we had no other option, like asking to pass the soy sauce.

"You would think that a child born through artificial insemination would be cherished, because they were so wanted. I wasn't. I felt depressed after I discovered the truth. I couldn't live with my family anymore."

A slender woman with long, wavy hair, Hama has had a hard time finding someone who understands the ordeal, she said. She once sought help from a psychiatric counselor, but felt that it was impossible to share her pain with someone who is so unfamiliar with AID, which most people are. She also consulted her friends, but in vain.

"My friends understood what had happened, but not what I felt about what had happened," she said.

A panel of experts under the Health, Labor and Welfare Ministry came up with a report on the use of donated sperm, eggs and embryos for infertile couples in 2003. The report advocated, for the first time, that the names and addresses of sperm donors be disclosed to children of donor insemination when they turn 15. However, there have been no official moves since then, leaving anxious offspring such as Nishimura and Hama waiting in limbo.

Naoaki Kuji, assistant professor of obstetrics and gynecology at Keio University School of Medicine, the authority in the field of AID, says it is difficult to balance the feelings of all parties concerned.

"As a clinician, we know that there are children [of AID] who want donor information," he said. "But a survey we took in the past indicates that parents don't want their children to know about their donors.

"And then there is this issue of how donors themselves feel about it. Many of them consented to being donors on condition of anonymity, and they moved on after that, just like when you donate your blood. Now many of them are married and have kids, who probably don't know they have donated sperm."

Kuji, along with his colleague at the university, conducted a survey of sperm donors at the end of last year. Of the 120 men who donated semen between 1998 and 2004 and who were contacted by Keio University's obstetrics and gynecology department, 32 responded. They are now aged between 31 and 40, according to the survey.

The results show that 66.7 percent of the respondents "feel it's only human" for AID children to want to know their biological fathers. But asked whether they would be willing to make contact with children born from their sperm, 57.6 percent said they "absolutely don't want to have contact with offspring in any form," while 42.4 percent said they don't want to know if their sperm successfully produced children. Likewise, 87.9 percent of donors didn't want to see their biological children, even if their anonymity was assured.

Nagaoki noted that the remaining 12.1 percent, who said that -- with their anonymity guaranteed -- they wanted to meet their biological children, should be allowed to do so.

While AID children's soul-searching continues, they are slowly building a network of sympathy and support. Hama recently set up a group with people who contacted her after sporadic interviews she has given to the media. Now the group of "fewer than 10" people meet once every two months in Tokyo and talk about their similar experiences, said Nishimura, who sat alongside Hama at a Tokyo cafe for this interview.

"My friends tell me, 'You should appreciate yourself, you are lucky just to be here,' " Nishimura said. "But I can't overcome the feeling that I wasn't exactly born, but made. I keep wondering if this is something humans are allowed to do. I don't feel like my presence is authorized. And my children were born from a mother who was not supposed to be born. I feel like apologizing to my kids, 'I'm so sorry I gave birth to you.'

"None of my friends agree with me. They keep telling me, 'No, you shouldn't feel like that.' But I just feel I need to keep expressing my unease about my existence, and I think I have become more positive as a person through doing this. . . . In our meetings, no one tries to deny my feelings. We just talk, talk and talk, and no one interrupts us."

So far, the Donor Insemination Offspring Group just meets to talk. They are not on the streets handing out flyers or soliciting petitions. But Nishimura said she dreams of a day when information about her donor will be available to her so that she can meet him if she wants to.

"I might trace my roots or might not," Nishimura said. "I might quit my search halfway through. I have no intention of making any demands on him, or asking that he takes responsibility . . . though, of course, I hope he would be the kind of person I can feel proud of.

"But I just want to confirm the existence of the person who made it possible for me to come into this world."



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