|Ryan was conceived though a unique artificial insemination process designed to avoid transmitting HIV. So far, it looks like his father has not passed the virus on to him.
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etting HIV often means giving things up - sometimes the very things one had lived for, like jobs and families. That's what nearly happened to Mike and Mary, a couple living in upstate New York (they asked to keep their last name private). Mike got HIV almost twenty years ago from a transfusion of contaminated blood products. After battling a succession of nearly fatal illnesses, Mike's once powerful ambition to have children vanished. But not his wife's.
So the couple turned to medical technologies originally designed to solve an entirely different problem: infertility.
While an HIV diagnosis was enough to discourage Mike from having children, Mary found herself craving them mightily.
"I started wanting a child so badly that there was physical pain inside," Mary says. "Whether I would be at someone else's baby shower or someone at work would get pregnant. Everything in my being was just crying out for a child."
Mike felt bad about Mary's suffering, but insisted it was better than the prospect of HIV. "I refused to put her at any risk of infection. To me that wasn't even an option," Mike says. "So, we were not going to have children because there was no way around putting her at risk."
|Mike rests with his newborn son.
Scientists say the odds of a woman contracting HIV from a single act of unprotected sex are about 25 percent. The baby might also be born HIV positive, but that's far less likely. Though Mary never did take that gamble, she was prepared to, especially when it seemed Mike would die soon. "I was feeling that losing Mike would be (easier) if I had a child.
Mike is a tall, lanky, outdoorsy fellow with broad shoulders and a liking for flannel shirts. Mike is also a hemophiliac. He needs regular infusions of blood clotting factor to keep from bleeding to death. In the early 1980s, he and other hemophiliacs got infected with HIV from contaminated blood products.
In the mid-1990s, Mike started taking a new experimental combination of AIDS-suppression medications commonly known as the "drug cocktail." And like many others on the new therapy, Mike got dramatically healthier. So he and Mary got serious about children. "It was like, dammit, let's start living," Mary says.
The disease had already claimed several of their dreams. Mary and Mike live in a small town in the Allegheny foothills of upstate New York. HIV forced Mike to give up a job he adored. Mike was a farrier a horseshoe maker but because HIV weakens Mike's immune system, all that aromatic crud on the floor of horse barns threatened to kill him, because it seethed with potentially deadly infections. In fact, Mike nearly died twice when his HIV flared into AIDS.
|Mike enjoys the outdoors. HIV forced him to quit his job working with horses, but he still finds time to get out into nature.
"You gotta understand I'm working on horses' feet," Mike explained as he demonstrated how to pound a glowing horseshoe into a graceful U shape at the forge in his garage. "Dirt alone has all kinds of viruses. If you add manure to that mix, it's basically a bad, bad environment for a guy like me." Mike now works in the security office of a local college.
HIV also compelled Mike to get rid of the rabbits he used to raise in the garage, the chickens in the hen house, and the cows in the pasture. Still, Mike delights in tromping the snowy hills on their wooded property in his green knee-boots, planning timber harvests and tracking wildlife. He wants nothing more than to teach his children about the woods and the animals.
Mary is slender and athletic, with wire-rim glasses and straw-colored hair and a matter-of-fact approach to life. Like many couples with HIV, they found out that adoption agencies generally steer clear of applicants with the disease. Mike and Mary saw few choices except having their own baby. One day, Mary heard on the radio about a new fertility program in Boston designed specifically to help couples like them have a baby, and yet evade the HIV virus.
An Immaculate Conception
Harvard researcher Anne Kiessling and a group of colleagues created an independent clinic to offer experimental fertility treatments for people with HIV and other diseases, treatments unavailable anywhere else in the country. Experts have no way to count how many American couples with HIV want to conceive children - but they guess the number is in the thousands. And researchers report a growing stream of calls from these couples wanting reproductive help.
Kiessling, an associate professor of surgery at Harvard University, is an expert in both the science of human reproduction and the transmission of diseases such as HIV. She built a special embryology lab in a camper van, which she parks outside a small surgical clinic in Boston. Conventional hospitals and infertility clinics have refused to work with HIV patients, Kiessling says, because administrators fear potential lawsuits if something goes wrong. So Kiessling's van is a kind of mobile clinic - and it safeguards other infertility patients from specimens infected with HIV.
|Mary holds Ryan just after giving birth. The in vitro fertilization, she said, was about as safe as using condoms.
One spring day, Kiessling and her team remove the eggs from several women whose partners are HIV positive. The simple procedure takes place in the operating room of the day-surgery. Kiessling then carried the eggs in a warming container to the van. Peering through a microscope at her lab bench, Kiessling gingerly instills two eggs each into liquid-filled dishes. The pair of eggs float like air bubbles suspended in warm oil.
"We're going to add two million sperm to each dish," Kiessling says. She uses a routine lab technique with the unlikely name "sperm washing" to remove HIV infected cells from the man's semen. Each specimen is then tested for HIV, and only negative samples are used for fertilization. The theory: that HIV skips the sperm cells and infects other cells that can be safely cleared away.
"If the fertilization takes place in the culture dish, then the mother is not exposed to sperm at all," Kiessling explains through her surgical mask. "It is less risky than what they've already been doing (by having sex with a condom that might break)." The mother's only potential contact with HIV is through the fertilized egg.
Nonetheless, doctors are discouraged from helping a woman get pregnant with an HIV-positive man, both by medical associations and the federal Centers for Disease Control and Prevention. The CDC is reviewing scientific data on sperm washing, but researcher Ann Duerr says the agency warns against the procedure. "Semen from HIV-infected men should not be used, period" Duerr says.
|The happy family. Ryan is the first baby born in the United States with techniques designed specifically for HIV-positive couples.
The CDC is reviewing data on sperm washing to see if that procedure affords any real protection. But, Duerr says, using in vitro fertilization (IVF) is even more experimental. "IVF was developed for the treatment infertility. It was not developed for HIV risk reduction. IVF has been used very rarely for this in this country, and there really is not enough data to evaluate its safety," Duerr says.
Since the Boston IVF program is still an experiment, Mary and Mike thought carefully about the dangers. "I would say to Mike, it's as risky as when I go to bed with you at night and we have sex with a condom. It could break," Mary says. "So for me to have in vitro, I didn't feel the risk was anything more than I've been living with since 1984."
Mary and Mike conceived twins in Ann Kiessling's laboratory van. One fetus miscarried, but the rest of the pregnancy progressed normally. Mary took a number of HIV tests along the way and they all proved negative.
On May 28, early in the morning, Mary lay groaning in a birthing bed as Mike, a midwife, and a doctor hovered nearby.
"Push through it. Push, Mary!" a nurse coached Mary.
"The baby's head is coming out," the doctor said. "Push his head out, Mary. You're doing it." The baby's heartbeat thumped steadily on the monitor as a glowing ribbon of sunrise appeared through the hospital window.
|While the proud parents are happy that new medications have gotten them this far, they know there are many challenges ahead.
Mary and Mike agonized for years about whether or not to have this baby. They spent a frightening amount of money for the in vitro procedures, and now, this child - sired in a laboratory dish - would be the first American conceived at a fertility clinic established specifically for couples with HIV.
That's all very inspiring, Mary says later, but right now it felt like giving birth to a cinder block.
With a final push, Ryan was born at 4:27 AM. He weighed a compact six pounds, four ounces. Mike and Mary named him after Ryan White, the late Florida boy who, in the 1980s, fought to go to public school in spite of his illness.
Tests later showed that Mike and Mary's Ryan is HIV negative. While Mary is grateful for the science and the good fortune that helped her safely bear this child, she is ever the clear-eyed realist about the difficulties young Ryan may face joining a family with a father who has an incurable disease like HIV.
"I'm thankful that Mike is healthy now. But every day continues to be a gift. We're certainly not out of the woods as far as Mike's health is concerned. So, we have our challenges ahead of us."
Mike died April 4, 2002 in a New York hospital. Read his obituary.
Images this page are Mike and Mary's family photos.