Is It Worth the Cost? : One Family Takes a Painful Stand

At the end of a row of palm trees, in the section where so many other babies are buried, Elizabeth and Javier Zendejas busy themselves around the grave of their son, Eder. They spend so much time at Calvary Cemetery that they bring a foam pad to ease the pain of kneeling on the hard-packed dirt.

Eder died on March 22, five days after choking on a piece of steak. He was 19 months old.

Were it not for a landmark ethics decision at Childrens Hospital of Los Angeles, Eder might still be lingering in an irreversible coma.

Rarely do families take their cases before ethics panels. Traditionally, such committees debate life-and-death questions with little family participation, keeping the conversation within the medical circle.

And seldom does their guidance extend to withdrawal of all life-sustaining treatment. Most often, the debate centers on whether to resuscitate a patient and does not reach the dramatic step of halting nutrition and fluids.

The Zendejases went before the ethics committee with an interpreter. They not only asked that Eder be taken off life support, they also achieved a victory for a child’s right to die.

“This is an extraordinary family, and they made this an extraordinary case,” says Dr. William Goldie, chairman of the hospital’s ethics committee.

Shortly after dinner on St. Patrick’s Day, the little boy named after a Brazilian soccer star was jumping up and down with his brother when he suddenly turned purple and fell limp on the floor. Later, doctors determined that he had regurgitated and then inhaled a bite-size piece of steak.

According to Dr. Antonio Galvis, who treated Eder at Childrens Hospital, the food “lodged between his vocal cords and blocked his breathing.” He was without oxygen for about 15 minutes.

The accident happened on a Sunday evening. The next morning, Galvis says, the boy was still in a “profound coma; the prognosis was very grim.” One lung was collapsed and the toddler’s brain was swelling. Pinches, sharp pokes, loud noises and sudden movements failed to evoke any response.

“He was not opening his eyes, not moving, not reacting, not coughing. . . . The only thing this child could do was to breathe a little,” Galvis says.

The family prepared their older children--Marisol, 15, and Cesar, 14--for what they would see when they visited their little brother. They did not prepare them for his death, but that possibility was very much on their minds.

“When Dr. Galvis showed us the drawing of our baby’s brain and how much of it was dying, our hope began to slip away,” says Javier Zendejas, a 34-year-old restaurant worker.

Four days after the accident, his parents were still at his bedside and Eder was still being fed intravenously and was hooked to a respirator.

“At this point,” recalls the father, “all our hopes were nearly gone. I said to my wife, ‘He may live, but he is not going to get well. I’m afraid he is not coming back to us.’ ”

Galvis outlined the family’s options:

Doctors could open a permanent airway in Eder’s throat and surgically install a feeding tube through his abdomen, or they could remove Eder’s present breathing tube but maintain all other therapy, including fluids and nutrition, or, as Galvis puts it, “We could remove all therapy and let nature take its course. . . . “

The family prayed and prayed about what to do. They held each other and they held Eder. They stood at their child’s bedside and wept.

“We told Dr. Galvis, ‘If our baby is going to live, we want him to do it without all these machines and needles,’ ” says Elizabeth Zendejas, 36. “At last, we said, ‘Let God decide.”’

But it wasn’t that easy.

According to Goldie, a consulting neurologist balked at the parents’ plan. He felt it was too soon to forgo all life support, too soon to say the child’s coma was truly irreversible.

Although he had seen Eder, the neurologist had never met the parents. “He wanted to do more tests, and when we asked what are the chances anything will be different, that we’d get our baby back, he told us, ‘About one in a million,’ ” says Elizabeth Zendejas. “One in a million!”

The Zendejases, who speak only Spanish, had little knowledge of medical technology and none of hospital protocol. But when Galvis told them about a group called the Ethics Resource Committee, they leaped at the opportunity to argue their case.

“It was not frightening for us (to go before the doctors),” says the father. “Our baby’s suffering gave us the strength.”

“The question was whether the neurologist’s point of view had been fully shared with the family,” says committee chairman Goldie, also a pediatric neurologist. “We felt it was important for the family and the doctor to meet, since everyone else involved in the child’s case already agreed with the parents.”

But the meeting between the parents and the neurologist did not go well. The parents were angry and the neurologist was so upset by their reaction he quit the case, the Zendejases say.

“This was a very impressive confrontation,” Goldie says. “Clearly this family had wrestled long and hard with their decision. They were convinced it was in the best interest of the child they loved so much.”

By the end of the meeting with the family and a hospital interpreter, the committee was convinced the family was fully informed.

Although on paper families have access to ethics committees, the Zendejases may be the first at Childrens Hospital to so powerfully seize that opportunity and use it to make a truly life-or-death decision for their child.

“We decided their point of view was extraordinarily important,” says Goldie, “and that we had to accept their autonomy.”

That afternoon, Eder was removed from his respirator. He began to breathe on his own. But before the next step could be taken--to discontinue fluids and nutrition--Eder’s heart slowed and finally stopped.

“We are very, very sad that our baby is gone,” says Javier Zendejas, “but we know that everyone did everything that could be done for him.”