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As a couple, Carol and Larry Madeiros had no doubts. As eager potential parents, they had plenty.
You see, Larry has HIV.
Miracle child
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Carol holds a stone from Martha’s Vineyard and a bottle of holy water that played a part in their quest to have a baby.

Story by Dave Scheiber • Photographs by Bill Serne • of the Times staff

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Carol, Ashley and Larry Madeiros share a warm family moment in the front yard of their country home in Lake Worth.

© St. Petersburg Times, published March 7, 1999

LAKE WORTH -- Just past dawn, gentle shafts of sunlight stream into the windows of a house that could have been lifted from the log home layouts of Country Living magazine.

Outside, the world is still sleepy and silent amid the longleaf pines and melaleuca trees on the pastoral fringes of Palm Beach County. But inside the cedar walls, painted a shade of blue-green more vivid than the Atlantic Ocean 12 miles to the east, a morning ritual is in progress.

Ashley Taylor Madeiros, a bundle of smiles two weeks shy of nine months, is busy lighting up the master bedroom better than the rays dancing through two picture windows onto a sea of rumpled green sheets. Her parents, Larry and Carol Madeiros, love this time of day, when they hear Ashley stirring upstairs through the baby monitor and bring her down into their king size bed to play and cuddle before facing the day.

Larry cradles Ashley while Carol dangles the top sheet in front of her daughter's face, then quickly pulls it away. "Peek-a-boo!" Carol coos, revealing a beaming infant with dimpled cheeks, fine brown hair and large greenish-gray eyes that reflect back all the love showered upon her since her birth May 18.

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Carol Madeiros cherishes the early morning hours when she gets Ashley out of her crib and brings her to bed to cuddle.

"When she was born, I just looked at her and went, "I can't believe you're here,' " Carol says.

In fact, there were many times she and her husband thought they would never experience such a moment. Surmounting enormous medical, financial and bureaucratic obstacles, they had become parents of their own baby, a healthy baby. There was an especially good reason to be overjoyed about that.

Larry has HIV. That is why Ashley is nothing short of a miracle for her father and mother. She is also the source of new hope for other couples like them, classified as "HIV discordant."

This little-known segment of the population has wrestled in the shadows with daunting questions: Do they try to conceive a child when the father has the human immunodeficiency virus and the mother is healthy? Can they safely minimize the chance of infecting the baby and mother? In the end -- even with artificial insemination or implanting a fertilized egg in the womb -- is the dream of conceiving a child worth any risk of spreading a virus that can lead to the nightmare of AIDS?

Larry and Carol need only look at the precious little girl nestled on their bed to know that, at least for themselves, they made the right decision. Ashley is the reason they have now chosen to step forward, to talk publicly about their remarkable story and the amazing breakthrough that made it possible.

"What we want to do, in any way we can," says Larry, "is let people in this situation know that they have a new option."

Journey of hope

Their story is one of relentless detective work and perseverance. It led them, via the Internet, to an obscure laboratory procedure pioneered half a world away. The "sperm cleansing" method promoted by Dr. Enrico Semprini in Italy ultimately allowed Carol to give birth to Ashley, and leave both of them free from any trace of HIV.

Other couples are known to have used the method overseas with positive results. But Larry and Carol are the first identified pair in the United States to employ it successfully, according to doctors working with HIV discordant couples. In addition, Larry and Carol have started counseling other couples and steering them to specialists who can help. They have also met with producers of NBC's Dateline, which has started taping a segment on them to air this year. Their quest to have a baby was grueling enough, but it has been only one of the enormous struggles Larry and Carol have faced along the way. Larry, 35, has hemophilia. The rare genetic disorder, which prevents blood from clotting, affects one in 10,000 births, and 99 percent of the cases involve males. Like many hemophiliacs in the early 1980s, Larry unknowingly walked head-on into catastrophe. He contracted HIV through an infusion of tainted blood.

Carol, also 35, has fought her own health battles. A decade before the pregnancy, she underwent major intestinal surgery that forced significant changes in her day-to-day living.

Today, they seem the picture of health: Carol is pretty, athletic, outgoing; Larry has a solid 5-foot-11, 180-pound build, chisled good looks and stylishly moussed black hair. He speaks with a free-wheeling New York style that sometimes sounds as if he is doing a stand-up act, even while talking about hard times, like his childhood. It was a time when his his joints bled internally, schoolmates called him "The Hemo" and he learned to give himself injections of life-saving "factor IX" to make his blood clot.

Larry does not know when he gave himself a shot of HIV-contaminated blood. By the mid-1980s, as AIDS spread and more hemophiliacs got HIV, he suspected he had already contracted it. The best thing to do, he decided, was assume that he was infected, practice safe sex and take necessary precautions. But he also chose not to get tested and tried not to worry about it. "At that point, AIDS was thought of as a death sentence," Larry says, "so what the heck were you going to do about it if you had it?"

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Larry manages his daily regimen of two dozen pills by organizing them in a plastic box, with a guide of what-to-take-when taped to the inside lid.

But his hunch about HIV was right. The time-bomb in his immune system had started ticking. In 1995, it exploded. AIDS-related pneumonia nearly killed him. That is why, in addition to taking expensive shots for hemophilia, Larry now downs two dozen pills a day, a fistful of 12 at a time. Without these pills, Larry would not be alive.

Carol is the daughter of a rugged lumberjack from Montreal. Growing up, she wasn't big, but she was tough. She excelled in sports, twice winning her field hockey team's Most Valuable Player award at Siena College in upstate New York. After graduating, she began selling copier machines near Albany. That is when the agonizing stomach cramps began.

While giving copier demonstrations to clients, she would hide a heating pad under her suit jacket to try to lessen the searing pain. After months of misdiagnoses, which resulted in hemorrhaging and severe weight loss, Carol was rushed to the hospital. The news was bad: ulcerative colitis. Major surgery was required to remove part of her small intestines and colon. She was fitted with an external pouch on her abdomen to collect solid waste, and later had surgery to create an internal pouch.

Carol kept a positive outlook. She also had a boyfriend who stood by her. She and Larry had met the year before, when they answered the same ad to wait tables at the Albany Marriott in 1986 and were paired up as a serving team. Six months after her surgery, he bought a ring with his first credit card and proposed to her. In the fall of 1989, in a picture-book ceremony by a shimmering lake in the Adirondacks, they were married.

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Beside their kitchen counter, Carol and Larry reflect on the struggles they have had, and what life might be like if they didn't have each other.

"We were meant to be together," Carol says.

Top-notch medical care has helped them stay together and thrive. There was the laid-back doctor with the Hawaiian shirts and long pony tail, Robert Campitelli. When Larry's T-cell count dropped to 4 in '95, well below the 200 level that defines AIDS, Campitelli boosted his spirits and made him realize he could fight back. "Hey, if you're gonna have HIV, now is a good time. There's so much new stuff coming down the pike to help you," Larry recalls the doctor saying.

A year later, when the virus took hold again, dropping his T-cell count to 9, Larry went to see Dr. Robert Keller. The South Florida immunologist was an expert in dealing with hemophiliacs with HIV, and placed Larry on an aggressive regimen of anti-virals. Keller started with AZT, and then a powerful new drug, protease inhibitors. In a month, Larry's viral load went from extremely high, over 100,000, to undetectable. With Keller's supervision, he has kept the virus at bay.

In the past four years, both Larry and Carol have placed their faith and future in the work of the Italian doctor who pioneered the sperm-cleansing technique in research at the University of Milan more than a decade ago. Semprini separated sperm cells from semen, then placed the sperm cells on an incline. The sperm naturally swam upward, and the seminal fluid flowed downward, apparently carrying with it the HIV. Though not viewed by doctors as a guarantee, Semprini's record is impressive: No mother has been infected in more than 1,600 artificial inseminations, and in the 300-plus births that resulted, not one child has been infected.

The method has not yet received the blessing of the U.S. medical community, but a handful of doctors in the United States are beginning to practice it openly, including Harvard researcher Ann Kiessling of the Assisted Reproduction Foundation. Kiessling, trained as a virologist and embryologist, was uncertain that hospitals would back her program, so she converted an old RV into a mobile clinic.

Dr. Mark Sauer of Columbia University is also a proponent. He is using an added safeguard called ICSI (Intracytoplasmic Sperm Injection) in which a single sperm cell is injected directly into an egg, further reducing any chance of HIV transmission. So far, Sauer has treated 10 couples. Three pregnancies are in progress. He points to Larry and Carol as catalysts in his work. Sauer was moved by their story when they wrote him in 1997, asking if he could suggest options.

"It was a result of their request that we started our program," he says. "There are more and more heterosexual couples, where the father is HIV-positive, wanting to start families. If you followed the recommendations of the (Centers for Disease Control), they would be precluded from having their own children. That's an awfully tough sentence that just adds to the tragedy. Their lives are already hard enough."

A baby's life

Snapshots of a special child:

Click. Inside The King and I Thai restaurant, senior citizens can't stop themselves from approaching the Madeiros table. The magnet is the little girl in a high chair, Ashley, who smiles broadly at any and all who walk by. "Oh, she's so cute," says one woman. "She's so beautiful," chimes another.

Click. At a special screening of A Bug's Life one recent Saturday morning, Carol greets area doctors and their children. As a pharmaceutical representative for Abbott Laboratories, she has arranged the event at an area theater complex to entertain the children of physicians who have come to hear about new products. Larry shakes hands and chats. It comes naturally to him as a patient advocate and legislative liaison for Hemophilia of the Sunshine State. Where is Ashley? Sleeping in her father's arms, as passers-by take peeks and nod approvingly.

Click. On the floor of the spacious kitchen in the house her parents designed and built, Ashley yammers away as two pals -- Chucki, the golden retriever, and Bungee, the tabby -- recline at her side.

Of course, it wasn't like this not so long ago. Larry and Carol can remember when making money, not a baby, was the main priority. Larry had come to Florida to hit it big in commercial real estate. He succeeded. But Larry's dangerous AIDS episode changed everything, and they knew the time to have a child was now. They knew there was a chance for a healthy baby to be born to HIV discordant couples via sexual intercourse; mothers could lessen the risk of infection to themselves and the baby by taking AZT. But it seemed like Russian roulette.

So they went online and made countless phone calls in pursuit of the latest information, determined to find a safe alternative. The break came when Carol called the University of California-Los Angeles medical library, which sent her a copy of an article about the work of a doctor named Semprini. "This is it, this is what we have to do!" Carol recalls saying.

They located his Web site, and Larry was struck by one point made by Semprini: All the HIV fathers in his study over 10 years were still alive -- they seemed to have more to live for. Larry and Carol even spoke with Semprini himself. They thought about traveling to Milan, but it was too costly. So the trick would be finding a doctor at home to try Semprini's method.

Through a series of referrals, they found a young specialist building his OB/GYN practice. That doctor had planned to speak with the St. Petersburg Times for this story, but at the last minute requested anonymity. The doctor was worried he would lose patients who might disapprove of his contact with HIV individuals and the use of an unsanctioned process to help them. "His fear illustrates the unwarranted social stigma that still comes with HIV," Larry says.

The doctor liked Larry and Carol right away, and after studying Semprini's research, believed the technique would work. The Madeiroses agreed to sign a liability disclaimer, and the process began.

The method would be artificial insemination, costing $1,000 per try and covered by Carol's insurance. She went on a strict diet and took drugs to spur egg production, but five tries failed.

Their next option was in vitro fertilization, considered twice as effective as artificial insemination. It is also far more costly: $10,000 an attempt. Fortunately, Carol's health plan had recently changed to cover in vitro. The catch: only four tries allowed.

Carol started another grueling regimen of shots, with all the unpleasant side effects of a menstrual cycle lasting weeks at a time. The first effort failed. With just three chances left, they made a tough decision to leave the doctor. They felt close to him, but thought their odds would be better with one of several big South Florida fertility clinics.

After choosing one, they underwent a rigorous orientation and prepared for the morning when Carol's eggs would be harvested. They awoke at 5:30, made the 90-minute drive to the clinic, sat in a waiting room. Then a nurse arrived. There was a problem.

A clinic attorney had discovered an obscure Florida statute that made it illegal to knowingly transfer HIV-infected tissue from one person to another. The law was designed to keep drug addicts with HIV from selling their blood to blood banks for cash, not married couples wanting to have a baby.

Larry, normally easygoing, lost it. He demanded to speak to the clinic doctor supposedly scheduled to perform the procedure, but he was on vacation. He made the nurse call another doctor at home, waking him up. Larry raged, but nothing could be done.

He and Carol returned home, crushed. In a few days, Carol made contact with the state attorney general's office to ask about the law. "Several people in that office told me it was a non-issue," she says. But without a revision in the law, which could easily take a year, the clinic would not proceed.

Larry and Carol were at a standstill. They had not told their family of their quest to have a baby, fearing a worried reaction. But the disappointment was so profound that they finally decided to share their secret at a family reunion on Martha's Vineyard. They were showered with love and support.

During a walk on the beach with Larry's older sister, Kathi, Carol saw a collection of rocks in what looked like a mystical formation.

Kathi suggested they might be fertility stones and urged Carol to touch one. When she did, the entire pile collapsed to the ground, as if to sum up her experience. But Kathi playfully insisted it was part of the ritual, and cajoled Carol to build the stones back up. Kathi saved one and made sure Carol took it home. She and Larry started rubbing the rock for good luck. And before leaving the island, they decided to return to their original doctor.

But first, Larry and Carol met with their Lake Worth priest, Julian Harris. They told him of their travails and their new plan. Father Julian had an idea. He had some special holy water from the Lourdes shrine in France and told Carol to find a fitting container for it. She wasted no time buying a delicate glass and pewter vessel and returning for the water. The experience gave her a sense of calm. As the new in vitro rounds began, she and Larry blessed each other each night with the water.

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Ashley Taylor Madeiros was born last May with no traces of HIV, thanks to a revolutionary medical technique pioneered in Italy. She cavorts here on the same couch that her father, Larry, nearly died on in 1995 with a case of AIDS-related pneumonia.

This time, four fertilized eggs were implanted in her womb. Two weeks later, the day before she was to learn the results, Carol couldn't wait for her doctor's appointment. Without Larry's knowledge, she took a home pregnancy test. She could hardly contain herself: It was positive.

The next day, her doctor confirmed it, disappointed he didn't get to break the news himself. Larry, meanwhile, was in the dark; Carol wanted to surprise him. Hours later, she caught up with him in a parking lot. He saw her wide grin and knew. "You're going to be a daddy," she said, handing him a card with this message: "Thank you for coming into my life and creating one."

For the next 10 minutes, in the middle of the crowded parking lot, they held each other and cried.

New directions

Another card from Carol rests on the kitchen counter top: "When it seems hard to keep on giving of your time, of yourself, remember you're making a difference. ... Love, Ashley and me."

Carol left the card recently for Larry, to bolster him as he worries about his mother's Parkinson's disease, and problems on so many other fronts.

For one thing, there's the issue of health insurance. Larry's "factor" products cost more than $200,000 a year and he has already reached $2-million and $750,000 caps on two previous policies. He's in the midst of a new policy now, but hoping to someday find a job with an unlimited cap. Otherwise, it may mean switching jobs every few years when the insurance money runs out.

He's busy lobbying Congress to speed up dispersing money from the Ricky Ray Hemophilia Relief Law, designed to compensate hemophiliacs infected with HIV blood. The $1-billion act passed last year, but the roughly $100,000 per person payout has yet to happen. A similar payout by private manufacturers of blood products was made to affected hemophiliacs in 1997 after a class-action suit.

Meanwhile, minor setbacks still occur with his HIV, requiring adjustments in drugs and careful monitoring. Strict adherence to medication and exercise is critical to his continued health. Many hemophiliacs with HIV have died because they either could not afford the proper treatment or did not stick to the plan. It takes immense daily discipline.

There is also some good news on their horizon.

In two months, they plan to move to upstate New York, back into the house where they once lived in the Adirondacks. Larry will work with a new national organization helping hemophiliacs, while maintaining ties to his current job; Carol will transfer with Abbott.

But before they go, there is another bit of business to take care of. Just two weeks ago, Carol began a new cycle of hormone shots for egg stimulation. She and Larry are working on another baby.

"We're not doing this to tempt fate," says Larry. "Some people may say, "Gee, you got lucky before. Don't push it.' But we're confident in the technology."

Standing at their kitchen counter, Larry and Carol glance at the floor where Ashley plays, and they reflect for a moment. Then Larry speaks.

"We've never had this particular conversation," he says, pausing with a hitch of emotion. "But if, God forbid, something happened to Carol or me tomorrow, we could know that what we've been through together is enough."

To contact Hemophilia of the Sunshine State, call (800)-684-2966

 

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