Forging a Bond That Defied All the Odds

They are finally friends now, Augusto and Wayne, 19 years after teetering on a life-and-death tightrope together. Just two guys talking--no longer the headline-making Dr. Augusto Sola and patient Wayne Abney, a kid born with a rare breathing disorder and a hole in his heart, the first U.S. baby to go home on a respirator.

“We’ll go to Hard Rock [Cafe],” says Sola, 50, in a dress shirt and tie, strumming an air guitar.

“Sounds good,” says Abney, 19, in a Virgin Records T-shirt that Sola--his godfather--bought him.

Until this visit, the two have not spent time together since Abney was a baby and Sola was a young doctor in a New Orleans neonatal intensive care unit. Now, Sola is director of neonatology at Cedars-Sinai Medical Center, and Abney is a high school graduate (3.7 GPA) who wants to become a disc jockey, possibly in Los Angeles.

In early January, Abney and his family drove 33 hours in their van from Slidell, La., for a two-month vacation in Los Angeles. For the first few weeks, they are staying with Sola and his wife, Dr. Marta Rogido-Sola, who is also a Cedars-Sinai neonatologist, at their Beverly Hills home.

Augusto Sola and Wayne Abney’s friendship should not have happened, according to the dictates of doctor-patient relations, particularly in the gut-ripping world of very sick babies. In July 1980, when Abney was born with a rare and severe congenital disorder, everything that Sola knew mandated that he keep his professional distance, an arm’s-length objectivity. What developed, instead, was a relationship that transcended traditional boundaries--and both doctor and patient credit each other for changing the course of their lives.

“He loves talking to me,” said Sola, who has Abney’s graduation picture on his mantle, with those of his own four children. “He loves telling me many things about his life, and I love listening to him.

“I don’t know that I could listen that long to a 19-year-old. But there is a bond here that is above and beyond what I can explain in human words.”

Said Abney: “I talk to him like a friend; he just happens to be a doctor. He’s like a long-lost relative or something.”

Personal Interest in a Tiny Patient

For Sola, Abney started out as just another patient at the New Orleans hospital in July 1980.

On the day of Abney’s birth, Sola was called to the delivery room with the news that a baby was not breathing. Sola put a tube in the infant’s lungs to get the air flowing and waved the father over. Listen, he told Gary Abney.

Gary Abney, an off-shore oil worker, leaned over and heard his son cry.

Still, the baby was critically ill. He would never be able to breathe on his own for more than a few minutes. The disorder is known as Ondine’s Curse, or congenital central alveolar hypoventilation. There is no cure.

Other doctors told Sola that the baby would not make it, that it might be more humane to withhold treatment.

But Sola saw the baby smile, through a world of beep-beeping machines that kept him alive. He saw that the baby’s mental development would be normal. He saw how much this baby’s parents cared.

“This kid was full of life,” Sola said. “He was amazing. . . . I knew this kid could live, even if there wasn’t a history of this [in similar cases].”

The doctor’s ties with the family began on a day at the New Orleans hospital when Judy Abney could not find her 4-month-old child.

On that day, Sola had unhooked the baby from the respirator and taken him outside in a stroller for a short walk. This kid has to see the outside world, Sola thought, and needs a break from the machines.

Then Sola returned to his desk. With one hand, he took care of paperwork; with the other, he hand-pumped air into Wayne’s lungs--which is what Judy Abney saw when she walked into his office. She began to imagine her son’s life outside of the hospital, although, at the time, most babies who were that ill and dependent on respirators never made it home.

“Something in me clicked,” said Judy Abney, now 42. “I thought to myself, ‘I can do this. I’m going to take Wayne home. This can work.’

“He set the course for our lives.”

Gary and Judy Abney had long discussions with Sola about taking their child home. He did not say yes or no. But Sola posted signs in their kid’s intensive-care room: “Confidence” and “Independence.” He arranged for the Abneys to get pulmonary, respiratory and other caregiving training. On his off hours, he organized a trust fund for his young charge and raised $35,000 to help supplement the Abneys’ medical insurance coverage. Before the baby was discharged from the hospital, Sola helped set up monitoring equipment at the family’s house.

At age 7 months, the baby made it home.

Sola turned the baby’s care over to another pediatric specialist. By then, the Abneys had stopped thinking of Sola as their doctor.

Before their son’s christening, the Abneys asked Sola if he would be his godfather. Of course, Sola said, and then called his mother in Argentina with a request. His mother sent along a family heirloom, one that had been passed on through the generations--and Abney’s christening gown would be the same one that Sola had once worn himself.

Facing Challenges Over the Years

Over the years, through Sola’s career moves to different cities, he kept in touch with the family through letters, Christmas cards, birthday presents and phone calls. He urged them to visit, but with the boy’s shaky health, the family declined. In 1995, while at a business meeting in New Orleans, he finally hooked up with them, but Wayne was too sick at the time to talk.

His health was bad at birth and got worse.

In an unrelated complication, at 8, he had open-heart surgery and doctors repaired a hole in his heart. He has a congenital bone defect that makes his bones brittle; as a boy, he could walk a few steps but once fell and broke both his legs. Now he’s too weak to leave his wheelchair. He has had strokes, leaving part of his right side paralyzed. With a tube in his throat to help him breathe, his voice is raspy.

But he never complains, his parents say.

With the support of his parents and 15-year-old brother, Mark, Abney says he is living the best life he can. His doctors believe he is the longest-surviving person to be on a respirator full time and live at home.

He likes to go dancing, spinning in his wheelchair and boogieing with his upper body. He attended public school from kindergarten through 12th grade, marking all the milestones, such as senior prom. He appears at local charity events as a comedian-emcee.

Along the way, he has met his heroes.

At age 6, through a local wish-granting foundation, Abney met actor Chistopher Reeve at a New York hotel. The actor dropped to the floor, next to Abney, and read Superman books with him. The two wrote to each other a few times after that.

In 1995, Abney was devastated when he heard that the actor had broken his neck and become a quadriplegic, largely dependent on a ventilator to breathe. He wrote to Reeve, telling him that it’s not so bad to have help breathing. Abney told him that he was proud of Reeve’s activism in the area of spinal cord injury research and that the actor was doing exactly what Superman would do. Reeve wrote back his thanks.

Now, as a young man, Abney is hanging out with his first hero, a man whom he had no memory of, save a couple of phone conversations.

The two don’t talk about what brought them together in New Orleans.

“I don’t focus on medical,” Abney said. “We don’t get into that touchy stuff. We’ll probably do that when I leave. We’re just getting acquainted.”

A couple of weeks ago, Sola invited the family to speak to pediatricians at Cedars-Sinai. He wanted the doctors to see how a family with a respirator-dependent young man can lead their lives.

The Baby Who Changed a Doctor’s Outlook

Since he met the Abneys, Sola has experienced many heartbreaking cases and met other families to whom he feels close. But among his many honors--including the American Academy of Pediatrics’ 1999 E.H. Christopherson Award on International Child Health--he counts his relationship with the Abneys.

He is humbled, Sola said, to think of how he almost listened to other doctors, who knew the case on paper, and said to let nature take its course; that clearly would have been the wrong call. He learned to look for the potential in very sick infants.

“They have families, they have personal histories,” he said. “They have pain and sadness, happiness, hope. It taught me how [families] need to be listened to and how they need to be respected.”

Sola had no idea that Judy Abney would decide to take her baby home after that day in his office.

“I did not do this to give the parents any message,” he said. “When parents have a sick child, they look at many, many things. That’s why it becomes humbling. Many times, it’s more important what you do or how you stand or how you look at the baby than what you tell the parents. These parents taught me that.”

Now, 19 years later, it’s just Augusto and Wayne.

One night, Sola took him to a dance club in Hollywood and to the Hard Rock Cafe, where Abney explained to him who David Bowie is.

“He taught me a few things; I taught him a few things,” Abney said. “He danced his 50-year-old white guy dance.”

On weeknights, when Sola usually gets home after 10 p.m., he and Abney talk music together.

Abney cranks up his rap CDs. And the two of them dance.

* Judy Abney is president of the Louisiana chapter of Sick Kids Need Involved People, an organization for families with children dependent on respirators or other machines. Information: (504) 649-0882 or 118 Ned Ave., Slidell, LA 70460.

* Renee Tawa can be reached at renee.tawa@latimes.com