Betrayal of Hope

UPDATED 09/05/1994 at 01:00 AM EDT Originally published 09/05/1994 at 01:00 AM EDT

ON A SWELTERING MARCH DAY IN 1992, Mary Orsak, a fifth-grade teacher in Downey, Calif., was taking a welcome break before picking up her son from day care. The last thing in the world she wanted was to return a call from the Tyler Medical Clinic in Westwood. Eight years earlier she had received a series of artificial inseminations and other fertility treatments there—all to no avail—at a cost of $17,000. "I remember thinking, 'Oh, God, they found another $1,000 we owe them,' " says Orsak, 41. Money, however, was not what the clinic was concerned about. When Orsak phoned, Tyler's director, Dr. Jaroslav Marik, told her, "You need to come in and get tested. The donor has AIDS."

Orsak stayed cool. "I simply thought, 'This is a mistake,' " she recalls. Three days later she took an HIV test. The results were positive—and devastating. "I was stunned," says Orsak. "I thought, 'No way. This can't be happening.' "

Mary Orsak is a victim of one of the rarest forms of HIV transmission. In the U.S. and Canada, 60,000 to 80,000 women undergo artificial insemination each year. Only seven—two of whom have died—are known to have contracted HIV from donated sperm, and all were infected before 1985, when a test to detect the virus was developed. Still, says Orsak, "the thought that a world-famous clinic would not carefully screen its donors never entered mv mind."

Since then, however, she has learned that the fertility business is largely unregulated. Though a 1988 congressional survey of 15 sperm banks found that all tested donors for HIV, only half of 1,558 physicians who treat infertility and participated in the study said they screened prospective donors for HIV as well. To date, only five states—New York, California, Ohio, Michigan and Illinois—require such testing. Orsak has filed a negligence suit against Tyler but may not live long enough to have her day in court.

Mary and Joe Orsak had been willing to go through nearly anything to have a child. The couple, who met in 1978 while working for the Boy Scouts, married four years later and immediately began trying to have a family. But Mary had a blocked fallopian tube and severe endometriosis, a migration of the lining of her uterine wall that sometimes causes infertility. Despite two corrective surgeries for the latter, she failed to conceive. Then in 1984, Joe, a hospital development executive, was diagnosed with a low sperm count due, Joe believes, to a childhood case of mumps. Mary's gynecologist told them they had two options: adoption or artificial insemination from a donor other than her husband. Joe, 46, admits that he wasn't thrilled by either choice—"It made me question my masculinity," he says—but when Mary opted for insemination, he agreed. She began treatment in late 1984. But by the following July, after 26 fruitless inseminations—eight from the HIV-infected donor—Joe and Mary were so emotionally and financially drained, they decided to give it up.

Adoption, however, was the blessing the Orsaks had hoped for. Their son Joshua was born on Sept. 30,1985. "We were both there. I was the coach and cut the cord," says Mary of the private adoption, as the couple relax in the sunny family room of the Laguna Niguel, Calif., ranch home they moved to in 1992. "It was unbelievable, the most incredible gift Joe and I have ever been given."

But Mary's diagnosis has shattered the family's sense of well-being. At first, Mary found, living with HIV meant working with unsupportive colleagues, a concerned school principal who urged her to keep her illness a secret and insensitive doctors. "By the time I learned I was HIV-positive," she says, "I'd had this for almost 10 years already. So their attitude was, 'You're on borrowed time, honey.' "

Feeling stressed, Orsak retired from teaching in June 1992. "I wanted to take an active role in my disease," she says. "I read and read about it. I've gotten into Eastern religions."She has also joined the only all-woman, HIV-patient support group in Orange County. "I needed to bond with people, because nobody understands HIV unless you have it," she explains.

Joe, too, needed psychological help and saw a therapist. "I blamed myself for Mary's having the disease," he says, "because I didn't say no to the artificial insemination." The couple has sought guidance, as well, in breaking the news to their son. "I did not want to devastate his childhood. I didn't know how much he would understand," says Mary. But one night Josh, then 6, asked, "Mom, do you have AIDS?" And Mary, who still does not have the full-blown disease, told him, "No, I'm as well as I can be." (Her T-cell count, a measure of the health of her immune system, is now at 385, a little more than one-third of the normal count of 1,000.) But when Joshua asked his mother, "Will you be here when I'm 14?" she nearly lost her composure. "I got teary," she recalls, "and I said, 'I don't know. I plan to stay healthy, but when the time comes that we're supposed to go, we'll go.' "

Orsak, who has so far been asymptomatic, understands the precarious nature of her disease but refuses to give way to depression. "Right now I feel wonderful," she says, aware that "right, now" is all she has. She rises early each morning and packs her day with meaningful activities. She is a room mother at Joshua's school, she attends his Little League games, and she speaks out on AIDS whenever she can. "I can't tell you what it was like before I decided to talk about it publicly," says Orsak. "There is a shame that most women feel from this disease. It is so shameful, they hide." But for the past two years she has been speaking at clubs and women's groups, informing women about the risks of artificial insemination, which is still largely unregulated. "The third day after I was diagnosed," she recalls, "I turned to Joe and said, 'I know without a doubt that I'm meant to do something with this.'

"I don't want this to sound hokey," she says, "but I love people, and I believe my whole purpose is to be of service. I know my spirit will live on in all the people I will have touched."

MARJORIE ROSEN
JOYCE WAGNER in Laguna Niguel

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