Chicago Tribune - October 20, 2006
Jeremy Manier, Tribune staff reporter, jmanier@tribune.com

But this time there was reason for hope. If doctors could devise the right strategy, the drugs that saved the lives of Chinea and her daughter also might save the infant from infection.

On that day in September of last year, painkillers and the anti-viral drug AZT dripped into the pregnant young woman's forearm, near a faint grid of scars where she had cut herself as a despairing teenager.

If the anti-HIV therapy worked, the newborn could be free of the virus, breaking one family's sorrowful chain of disease. A healthy baby was the best hope for Chinea's daughter to move beyond the misery she'd felt since learning she had HIV. For Chinea, too, the child could help redeem decades of struggle.

"We've come this far. We can go farther," said Chinea, a 44-year-old with a muscular build and a long, black ponytail.

Chinea's family has reflected the story of AIDS in America through three generations, beginning soon after acquired immune deficiency syndrome was first identified 25 years ago. Revolutionary anti-HIV treatments have brought hope and a kind of accommodation with the deadly virus. But AIDS is not conquered, and it continues to take a human toll.

The doctors at Northwestern Memorial Hospital knew they might not succeed in protecting the newborn from HIV. Chinea's daughter, who asked that her name be withheld for privacy reasons, had taken anti-viral medications for most of her life. The virus that survived was especially hardy and could pose a special threat to her infant.

Other worries

The baby wasn't the only worry. Even as Chinea held her daughter's hand, her thoughts were with her 12-year-old son, Chuckie, also infected from birth, who lay dying from AIDS-related kidney failure in an intensive-care unit across town. For a family trying to shed its legacy of disease, Chuckie's downward spiral was a harsh reminder that the virus could kill.

In the maternity room, Dr. Patricia Garcia was a calming presence. Her obstetrics group at Northwestern boasted a nine-year streak without delivering an HIV-positive baby, thanks to new treatments and single-minded persistence. But she had recently treated two other pregnant women like Chinea's daughter, infected since childhood. They posed an unpredictable challenge.

Garcia explained what the family could expect during the baby's Caesarean-section delivery and in the following weeks. The infant would need months of drug therapy and HIV testing. They could not know if the baby was free of infection until January--four months away.

Then Garcia paused. Chinea had been following the doctor's words intently. But her quiet daughter looked down and bit her lip.

"What are you scared of?" Garcia asked the young woman.

"Everything," she said.

Garcia nodded slowly. "Few women have to go through what you've gone through."

Almost as if to reassure herself, Garcia added, "No matter what happens, you will have done everything you can do."

Soon after, nurses in clog slippers shooed all the guests from the room and made preparations for surgery.

Later that night Garcia walked into the waiting room, tired but smiling. She told Chinea that the baby, a girl, had been born healthy, at 4 pounds, 4 ounces. The parents named her Jaylis Marie.

As Chinea listened, her eyes began to wander. Already she was planning her next visit to see Chuckie at Children's Memorial Hospital.

She would pray by two bedsides--for her son who was succumbing to HIV, and for her granddaughter who still might escape the virus.

Looming threat

Chinea had learned of her daughter's pregnancy one tearful evening seven months earlier.

Her daughter's boyfriend, a tall, tattooed man who spent much of the last decade in prison, walked into the family room of their West Side apartment and chanted happily to Chinea, "You're going to be a grandma!"

The parents-to-be thought she would be as happy as they were. But Chinea could only cry from shock and fear. What was her daughter thinking? She'd grown up knowing that unprotected sex could transmit HIV to her partner. And they all understood the threat that loomed over this pregnancy.

"I pray to God every night that my grandbaby is going to be OK," Chinea said a month later. "Because I wouldn't want my daughter to go through what I've been through."

Chinea has lived with HIV for more than 20 years, after contracting it from her husband, a secret abuser of intravenous drugs. For years she was unaware of her infection, including in 1984, when she went into labor with her daughter shortly after fixing the transmission on a '68 Chevy.

The truth came only in 1993, when Chinea had her youngest child, Chuckie. As a newborn he had constant fevers, and an HIV test turned out positive. Later tests would show that Chinea and her daughter, then 8, also were infected. The only one who escaped the virus was the middle child, Angel.

Chinea contemplated taking her husband's life. One night, she said, she stood over him with a baseball bat as he lay sleeping, weighing whether to kill him. But she had children to care for. Within two months of Chuckie's diagnosis, her husband was dead of complications from AIDS.

Everyone assumed Chinea and her infected children would suffer the same fate before long.

By 1993 an estimated 15,000 infants had been born with HIV--the first wave of so-called AIDS babies. Researchers projected that most would die before their 10th birthday.

But in the mid-'90s, scientific innovations were ending an era for AIDS in America. A new generation of anti-viral cocktails cut HIV deaths in the U.S. by more than 70 percent in just a few years.

And new treatments for infected mothers dramatically reduced the chances of mother-child transmission.

As AIDS babies who survived, Chinea's two infected children became part of a small and unique generation, ill-prepared for the challenges ahead.

Their lives could never be normal. Amid the chaos created by their disease, they would need discipline few youths can muster--to stay on medication, to endure the deaths of parents, to set necessary limits on their sex lives.

Chinea's daughter spent years as a child in deep depression, dwelling on the likelihood of her own death. She would scream at her mother for giving her the disease. As a teenager she cut herself with a razor.

Having a baby seemed a blessing beyond her hopes.

"I thought I couldn't have a family because I was sick," she said. "I was either scared of dying or scared of living and ending up a vegetable."

As Chinea's daughter entered puberty, she said, doctors counseled her not to have unprotected sex with partners who were HIV-negative. Her mother said she reinforced those messages at home, anxious to prevent others from contracting the disease.

"It all went in one ear and out the other," Chinea said.

Chinea's daughter graduated from a therapeutic high school for children with behavioral problems. Although she had no record of arrests, she brought home a series of boyfriends with checkered pasts. "She meets them in the back of squad cars," her brother Angel wisecracked.

The father of her child sported profane tattoos on his muscular shoulders and had a record of minor crimes, but he could flash a gentle smile. Chinea's daughter says she told him about her infection before they had sex.

Her boyfriend tells a different story. He says she told him she might have HIV, but she wasn't sure--when in fact she'd known of her infection for years. In the end, he said, they both wanted a baby, and he loved her. He decided that even if he did contract the virus, he could get treatment.

"I knew I was taking some kind of risk," said the boyfriend, who asked to remain anonymous.

Chinea's daughter said she was happy when she learned she was pregnant. She'd always dreamed of having a big family.

"Like my mom says, God does things for a reason," Chinea's daughter said.

Her boyfriend was lucky. He said his most recent HIV tests have turned out negative.

Though Chinea's daughter was excited about starting a family, the prospect of a baby also brought a confusing crush of emotions. The infant would demand patience and optimism--qualities the young woman had never cultivated.

She finally had a future, but that brought its own kind of fear.

Chuckie's burden

For all her mental anguish, Chinea's daughter never had faced a truly life-threatening complication from AIDS. In their family, Chuckie always seemed most at risk from his infection.

He was born with a mild form of cerebral palsy and learned to walk with halting, jerky steps. His sickness made it hard for him to attend classes regularly, and he could read only a few simple words. His frequent smiles showed off his big front teeth.

Early last year, around the time his sister disclosed the news of her pregnancy, Chuckie began having more trouble holding down his anti-HIV medication. His mother tried easing the doses with everything from pancake syrup to ketchup, but nothing could prevent his vomiting. His lifesaving pills were going to waste.

One morning in the first week of September, days before the baby was scheduled to be delivered, Chinea found Chuckie writhing in bed, foaming at the mouth. He was having massive seizures brought on by kidney failure, which doctors traced to his HIV infection. Unable to breathe on his own, he was whisked to the intensive-care unit at Children's.

On Sept. 8, the night before the baby was to be delivered, Chinea sat and wept by Chuckie's hospital bed. A blanket had fallen to one side, exposing his left leg and a foot swollen by excess fluids. He seemed to shake his head in response to every question.

Chinea was a square-jawed survivor, but she could feel hope leaving her. She was alone in her pain, having decided not to burden her daughter with news of Chuckie's struggle. Now, after looking forward to her grandchild's birth, Chinea found herself gazing through tears at her dying son.

"I should be jumping for joy," she stammered through her surgical mask. "I should be jumping for joy."

Decisive stage

The next day, when little Jaylis was born, the fight to keep the girl HIV-free entered its decisive stage.

The entire pregnancy had required delicate medical trade-offs. The first task for doctors was to keep the mother's levels of virus low using high doses of anti-HIV drugs. But the young woman's liver became inflamed from the medication, and doctors took her off the drugs earlier in the summer. The virus rebounded as her October due date approached, causing an urgent dilemma for the medical team.

A baby's risk of contracting HIV increases throughout pregnancy and peaks during birth, when the placenta's protective sheet is pierced. That mounting risk was even greater because of Jaylis' mother's spiraling viral load. The longer doctors waited to deliver Jaylis, the greater the baby's chances of contracting HIV.

Something had to be done. Delivering the baby six weeks premature seemed the least risky option--but just barely. It could reduce the child's viral exposure, but early delivery also could prevent the girl's lungs or brain from developing fully.

"I have to tell you, this was a difficult and controversial decision," said Garcia, the obstetrician who delivered Jaylis. "We're not in the habit of routinely delivering fetuses this soon."

Jaylis' HIV treatment resumed three hours before she was born, when doctors began giving her mother a heavy intravenous dose of the anti-viral drug AZT. Studies have shown that administrating such drugs just before birth and continuing the baby's therapy for the first six weeks of life usually ensures that the child will not contract the virus. But no one knew what to expect with Jaylis.

One week after Jaylis was born, and as her uncle Chuckie still struggled for life, the baby wriggled feebly in a bassinet at Northwestern, a feeding tube in her nostril. Her pink headband read: "Mommy's Little Princess."

The dark wrinkles under the child's eyes made her look strikingly like her mother, who smiled quietly at her tiny newborn.

The first HIV tests on Jaylis turned out negative. But that didn't mean she was out of danger.

If Jaylis had been infected at birth, it wouldn't register on tests for weeks or longer. Just to be sure, the doctors planned on testing her regularly for four months.

Until then, the family could not know whether HIV had struck a third generation.

Tough being a mom

Meanwhile, Jaylis' mother struggled with the demands of motherhood. During pregnancy she had been hospitalized because of dehydration and side effects of her anti-HIV medication. Now she had mixed feelings about her new role.

"It took me a day or two to really accept that I was a mom," she said softly. "I'm going to wait a while to have another one. She gave me a lot of pain."

Tensions only rose when the baby came home. One evening late last year, Chinea said, her daughter left the baby for a night out with friends and didn't come home for four days.

"I'm trying to teach her responsibility," Chinea said, "because I'm not going to be here forever."

They had no help from the baby's father. He says the month after his daughter was born was the best time of his life. But in October he was arrested on a carjacking charge and returned to the Illinois prison system. He is not scheduled for release until 2010.

The good news was that Chuckie had begun to make a near-miraculous recovery. He was beating AIDS yet again.

For weeks the boy remained in the intensive-care unit at Children's, unaware of his surroundings. He shed more than 50 pounds, and the hospital chaplains asked if Chinea wanted him to be baptized.

"Chuckie almost died," said his pediatrician at Children's, Dr. Ram Yogev, a wiry AIDS specialist who had grown up idolizing Albert Schweitzer's work with leprosy patients.

Kidney dialysis slowly cleaned out the toxins that doctors believed had caused Chuckie's massive seizures. In October he began coming back to his senses. He returned to the hospital often with infections, but he had his life back. Yogev started calling him "Miracle Chuckie."

And on Jan. 21, Chinea's family had reason to celebrate further.

Jaylis' final HIV test came back negative. Their long worrying was over. The little girl, strong now with attentive eyes, would not carry the virus that burdened her mother and grandmother.

"She gets to do whatever she wants," Jaylis' mother said, watching the child trying to sit up on her grandmother's bed. "It makes me know I did something good."

For a few months, the family's life continued much as it had. Chuckie became his baby niece's favorite playmate. Sitting by the kitchen table, the boy would screw up his face into silly expressions and flash his infectious smile, prompting waves of belly laughs from Jaylis.

Yet the family had hoped for more--that a healthy baby might help Chinea's daughter rise above her own wounded past. And that was not happening.

Starting in late April, Chinea heard little from her daughter. Often the young woman would bring Jaylis home after midnight, and leave soon after dawn. Neither Chinea nor the family's doctors knew where the mother and child stayed the rest of the time.

Chinea's daughter, now 21, also stopped giving interviews for this story. She asked the Tribune not to use her name or photo, saying she had friends who would not accept her HIV infection.

For more than two weeks in June, no one in the family's immediate circle heard from the young woman. Chinea, now 45, feared her daughter had fallen in with gang members, but there was no record of her being arrested.

When the mother and baby finally showed up in June, Chinea's daughter brought news: She was pregnant again. This time, Chinea didn't even know who the father was or whether he'd been tested for HIV.

Another baby on the way

"It's very irresponsible," Chinea said of her daughter. "She knows [her HIV status], and she's taking chances."

Once more, the troubled young woman faced the prospect of protecting an infant from infection. The baby is due in February.

Chinea has become a stand-in mother for Jaylis, and she now takes care of the child most days. Chinea's daughter, who visits sporadically, remains an enigma to her mother and the rest of their extended family. At least for now, Chinea hopes, the baby girl is safe.

"I never thought I'd be a mother again, at this age," Chinea said, shaking her head.

Chuckie, now 13, who goes to kidney dialysis three times a week, said he's relieved to have his niece back. Already at his young age, he knows how precious his time with her may be.

Besides, he said, "I want to get to know her before the next one comes."

The family's struggles have been personal for Yogev of Children's, who has cared for Chinea's children since they were diagnosed. He said he was hurt but not surprised to hear of Chinea's daughter's problems.

"Stability terrifies these patients sometimes," Yogev said.

Yet he also sees how far the children of AIDS have come. At one time, Yogev's staff focused on throwing birthday parties for young patients, knowing it was rare for them to survive even five years.

Now, talking of Chinea's family, Yogev's voice is tinged with wonder.

"That beautiful baby ... is going to be healthy," Yogev said. "Chuckie could have been buried five or six years ago. But we still have his smile.

"That is the hope," he said. "That's what we achieved."

- - -

Family mirrors nation's HIV struggle

In 1984, when Carmen Chinea gave birth to her daughter, she did not know she was passing on HIV. At the time there was no way to treat the disease or prevent its spread from mother to child. The number of American children born with the virus grew steadily in the following years. Chinea learned of her own infection in 1993, when she gave birth to another HIV-positive child. By the time Chinea's first grandchild was born last year, medical advances were allowing most newborns to escape infection.

PERINATALLY ACQUIRED AIDS CASES

By year of diagnosis

1985 through 2004

Dec. 3, 1984

Chinea's eldest child is born with HIV.

1985

The CDC recommends that women with HIV avoid breast-feeding.

Sept. 6, 1991

Chinea's son Angel is born.

1992.

The estimated number of perinatally acquired AIDS cases in the U.S. peaks.

Jan. 26, 1993

Chinea's son Chuckie is born, and an HIV test is positive. Later tests then show that Chinea and her daughter also are infected.

February 1994

A National Institutes of Health sponsored study gives the first evidence that administering the drug AZT could drastically reduce the transmission of HIV to newborns.

April 1994

Perinatal HIV prevention guidelines for antiretrovirals are issued.

2001

CDC recommends rapid HIV testing for women during labor and delivery.

From 2001-04, 7 percent of HIV positive pregnant women had not been diagnosed by the time of delivery.

2004

Fewer than 50 perinatally acquired cases of AIDS are reported, about a 95 percent drop from its peak in CDC data shows that for births during 2001-04, 16 percent of mothers with HIV-infected children did not have documented prenatal care visits.

Sept. 9, 2005

Chinea's daughter gives birth to Jaylis Marie.

Sources: Centers for Disease Control and Prevention; Tribune reporting

Chicago Tribune/Sue Erbeck and Kiera E. Westphal
061020
CT061006

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