Victor’s Legacy: A Trail of Broken Hearts

“Pull yourself together,” Eileen Swift tells herself. “You have to let him go.”

But she can’t. She touches his picture--those fat cheeks, that sweet smile--and her heart starts to hurt again.

In 15 years as a nurse, Swift has seen scores of babies die, hundreds of babies, so many babies that she long ago stopped counting. Still, no baby’s death ever hit her like this one.

“He was a special child,” she says, sobbing in a break room at UCI Medical Center. “He was more than just a patient.”

He was more than just a patient to more than just Swift, too. Dozens of hardened, battle-scarred nurses have been struggling to cope with the loss of Victor Gonzalez, a 10-month-old boy who died last month from a fetal stomach condition called gastroschisis.

Children die every day in hospitals, and many are well-loved by hospital staffers. But such children typically suffer diseases like cancer or leukemia, and their care tends to be provided by pediatric nurses with more experience in prolonged illness.

Victor was different, Swift and others say, because he died from a fairly common and curable birth defect, and because he lived in the hospital’s Infant Special Care Unit, a transitory ward where the average baby is no bigger than a Barbie doll and the typical stay is about two weeks.

“It was like he had 40 moms,” Swift says proudly, sobbing and smiling at the same time.

Also, Victor stood out because he entered the hospital as he entered the world--all but alone. Family visits were generally restricted to his 16-year-old mother, his father a phantom he never met. Every milestone in Victor’s brief life, from the onset of teething to the first time he rolled over, he reached in the company of several dozen blue-gowned nurses, who now go about their work with the downcast glances and heavy sighs of mourners.

“Victor was there in that hospital for 10 months,” says his mother, Laura Gonzalez, now pregnant again. “He grew up right there.”

Gonzalez praises everyone who cared for her son, but especially Swift, who took up a collection among her fellow nurses to pay for Victor’s funeral. “She’s a great person,” says Gonzalez, who recently asked Swift to be godmother to her second child. “And she loved my kid.”

But not only nurses feel Victor’s loss. A top administrator calls Victor one of the most exceptional patients in hospital history. A doctor who performed six operations on Victor, trying to rebuild the boy’s malformed intestines, can’t discuss the case without sobbing. Volunteers who felt “privileged” and “honored” to hold Victor and rock him to sleep now have trouble sleeping themselves.

Each day, staffers confront the mystery: How did an entire hospital, where sick children come and go in a distressing blur, fall so hopelessly in love with one little boy? And what became of the objectivity so highly regarded among medical professionals? It’s a complicated mystery, subtle as a heart murmur. The answer may have something to do with things like charm, and grit, and the innate ability of a 10-month-old boy to seduce women.

“He could reel you in from across the room,” says Bonnie Ritchey, an eight-year veteran who began caring for Victor on his second day of life.

Ritchey and other nurses talk about the twinkle in Victor’s eyes, the two teeth that made his smile so excruciatingly cute, the odd way he would pat the cheek of anyone who stopped to talk to him, as though offering comfort. It was, many say, a disarming gesture, one that created instant friendships.

“I wanted to get him a T-shirt,” says Lorraine Neher, one of Victor’s favorite volunteers. “It was going to say, ‘So many women, so little time.’ ”

Swift remembers the moment she fully grasped Victor’s charisma. She had settled him into his highchair and turned on one of his favorite Disney movies. He always had a distinctive way of sitting, she recalls, a way of reclining like a contented prince, and she left him sitting just this way while she ran to check on other babies in the ward.

When she returned minutes later, Victor was gazing at the movie still, sitting in the same position, but something was different. Then she noticed: His face and forehead were covered with red lip prints. None of the nurses and volunteers who walked past had been able to resist giving him a kiss.

Roughly 1,000 children arrive each year at UCI--home of the busiest newborn intensive care unit in Orange County--and Victor was among the 6% who die. “That’s probably more babies dying here than a community hospital sees in three or four years,” says Dr. Jack Sills, medical director of the Infant Special Care Unit. “That doesn’t mean that’s because poor care is given, but because of the nature of the beast. We take everybody else’s problem. This is the last stopping area, so the sickest of all babies come here.”

Many qualities made Victor loom large among so many patients, but his uncommon courage seemed to head the list. Strangers were taken with it, doctors were drawn to it, volunteers were awed by it.

“I used to call him my little Buddha angel,” says Mona Roberts, a volunteer who knew Victor almost from the time he was born. “To look in this child’s eyes! If you believe a teacher can be all ages, he was a little wise soul.”

Gastroschisis--in which the intestines are located outside the body during fetal development, and therefore damaged by exposure to amniotic fluid--renders eating difficult, if not impossible. Children suffering from gastroschisis (UCI sees about a half dozen each year) tend to be irritable and short-tempered. But Victor had the sort of soul that transcends a body’s discomfort.

“He would throw up--then smile at you,” says Maria Coussens, a seen-it-all nurse with 20 years on the job, who admits to sobbing so hard and so long after Victor died that her own children brought her an armload of flowers. “I will always remember him. I feel lucky to have taken care of him. He showed me a lot about courage.”

Tubes went in and out of his stomach; nourishment brought nothing but anguish. Victor never complained.

“Every time someone would come whining to me about some problem,” Swift says, “I’d tell them, ‘Yeah? Why don’t you go tell Victor all about it?’ ”

“He was just tough as nails,” says Dr. Cynthia Reyes, the hospital’s chief of pediatric surgery. “He just wouldn’t let go. And everything happened to him. Several times he almost died, and we said, ‘That’s it.’ But he’d bounce right back. He was a fighter, an incredible fighter, strong and strong-willed. And it was obvious at the end that he just didn’t want to fight anymore.”

Reyes and other members of Victor’s medical team couldn’t bear to face the obvious fact that he wasn’t getting better, that the nutrient-rich intravenous fluid keeping him alive had a side effect: It was also destroying his liver.

An emergency meeting was called, and the team debated every option available, every treatment imaginable. Because of the tremendous pain involved, and the slim chance of success, they voted against a transplant. (Besides, Victor would need to spend up to nine months waiting in Omaha or Pittsburgh for an available organ, and no one believed he could survive without the only family he’d ever known.)

“That’s when the room got very uneasy,” says Robin Koeppel, the nurse who monitors the quality of care provided by the unit. “I don’t think any of us thought we were going to have to deal with this.”

Once the decision was made to take no extraordinary steps for Victor--a decision his mother supported--Swift knew it wouldn’t be long. She bolted from the meeting and rushed to Victor’s side, but he rolled away from her and refused to make eye contact.

“OK, buddy,” she told him, kissing him gently. “I know, you’ve had it.”

The next day, with remarkable speed, Victor developed a severe infection and died in his mother’s arms, moments after a hastily arranged baptism. The room around him filled with people, as staff from throughout the hospital came to say goodbye.

“I thanked him for his courage,” says Dr. Reyes, sobbing heavily, fighting to get the words out. “And for teaching me so much.”

Unable to watch Victor die, nurse Koeppel fled the hospital. But her husband, a psychologist, ordered her to return. If she didn’t, he insisted, she would be haunted by Victor’s memory.

Later that night, she walked into Victor’s room, where Swift was waiting for her.

“I knew you’d come back,” Swift told her, as the two nurses hugged.

Then, Koeppel took Victor’s body into her arms and cradled him for half an hour, rocking him gently, reviewing the profound impact of his life.

Others, meanwhile, dwell on the power of his death.

“It helped me understand there are different aspects of nursing,” says Coussens, watching a premature baby take quick, shallow breaths inside an incubator. “It’s not just about healing. It’s also about letting go.”

Scores of doctors and nurses have decorated their lockers at work, and their refrigerators at home, with black-and-white snapshots of Victor, snapshots that highlight his exuberance without showing the yellow-green cast of his jaundiced skin. Many say the pictures help brighten those dark days, when everyone misses the little boy who wouldn’t tolerate interruptions of “The Lion King,” the little boy who liked to play peek-a-boo with anyone wearing a blue gown, the little boy who could warm an antiseptic hospital room with one smile.

“He reminded us of the human part of what we do, and he reminded us of what a difference we can make,” says Koeppel, her voice growing husky. “He taught us a lot. And we don’t say that about all of our patients.”