National System Bypassed : Baby Jesse Case Angers Organ Donor Officials

The transplanted heart of 19-day-old Baby Jesse continued to beat steadily Thursday, but the unusual circumstances surrounding his case sparked anger from officials of the national network of agencies that procures organs for medical transplant.

Hospital officials in Michigan bypassed the national system when they arranged directly with Loma Linda Medical Center for donation of a heart for Jesse. As a result, physicians in Louisville, Ky., who have an infant patient who has been waiting for a heart even longer than Jesse, never learned that a donor was available.

Barbara L. Schulman, coordinator of the Regional Organ Transplant Agency at UCLA, denounced the arrangement as “totally irresponsible.” Mark Reiner, president of the North American Transplant Coordinators Organization, called it “totally inappropriate.”

The latest dispute underlines the complexities surrounding the emotional issue of selection of patients and donors for organ transplants, one that perhaps is made more difficult when the patients are helpless infants.

In other developments Thursday:

- Dr. Leonard Bailey, the Loma Linda surgeon who performed the transplant, spent most of an hourlong press conference once again defending Loma Linda’s initial decision to turn down Baby Jesse as a potential transplant recipient. The rejection was based on the hospital’s conclusion that the infant’s unmarried parents could not provide adequate postoperative care. The hospital reversed itself after the parents, Jesse Sepulveda Sr., 26, and Deana Binkley, 17, agreed to transfer custody to the baby’s paternal grandparents.

- Bailey said Jesse’s “kidneys, liver and lungs seem to be working appropriately and his heart is working well.” The infant, he said, is not ready to be removed from a respirator, but “is moving in that direction.”

- It was disclosed that two of the previous four infants to receive new hearts in operations performed by Bailey are back in the hospital fighting rejection episodes.

- Bailey told reporters that “a child and a baby, both of whom need hearts desperately,” will be considered by the hospital’s transplant committee as candidates for new hearts.

Baby Jesse was placed in the national spotlight after the Roman Catholic priest who christened him and the California Right to Life League publicly protested the decision by Loma Linda Medical Center officials not to accept the child as a transplant candidate. The baby suffered from hypoplastic left heart syndrome, a rare but invariably fatal birth defect.

The Wait Begins

Once officials changed their stand, the wait began for a suitable donor.

Normally when a patient at a hospital becomes an organ donor, the medical facility notifies the regional organ procurement agency, which then searches its computer files for appropriate recipients throughout the nation.

But officials at Butterworth Hospital in Grand Rapids, Mich., instead made direct arrangements with Loma Linda and then notified the news media and television interviewer Phil Donahue, who had Baby Jesse’s parents in his studio for a taping. While the cameras rolled, Donahue notified the parents that there was a donor heart for their child. The couple broke down and wept.

“For the public relations people at the hospital to call the news wires and Phil Donahue show was totally irresponsible,” charged Schulman, whose agency arranges transfer of organs from 218 participating hospitals to six transplant centers in the Southwest, including Loma Linda.

Violation of System Seen

Schulman said that in her opinion Butterworth Hospital officials violated a carefully arranged system that is intended not only to assure that the proper recipient gets an organ but that provides adequate emotional support to the intensely emotional experience of the family of the donor.

“All of this flies out of the window in this kind of a case,” she said. “Both the news media and the hospitals have some responsibility for how well people (the parents) are able to adjust to this kind of attention.”

It has since been learned that another infant known only as Baby Calvin at Kosair Children’s Hospital, an affiliate of the University of Louisville, has been waiting for a heart transplant longer than Baby Jesse. But the Louisville child was bypassed in the hospital-to-hospital arrangement between Grand Rapids and Loma Linda.

Baby Frank reportedly would also have been a suitable donor for the Louisville infant had his availability been known.

“I think it is totally inappropriate for the hospital to make an announcement and use the media to say they found a heart while bypassing the procurement program that is functioning at their hospital,” said Reiner, president of the North American Transplant Coordinators Organization and director of the procurement program at the University of Florida.

320 Waiting Patients

Reiner said there are 320 patients listed in the national computer program awaiting heart transplants, including Baby Calvin. He was unable to state the exact number that are infants, but conceded that nearly all are over age 18.

Reiner said that the doctors at Butterworth Hospital are neonatologists, specialists in newborn baby care, who have little experience with transplants and who may not have been aware of the standing system.

But Jera Witte, public relations assistant at Butterworth, said there had been a “breakdown in communication” between Baby Frank’s physician, Dr. Edgar Beaumont, and the Michigan organ procurement agency.

Beaumont could not be reached for comment Thursday, but he told the Long Island newspaper Newsday on Wednesday that he offered the heart to Loma Linda before contacting the Michigan Organ Procurement Agency. He said he acted because he and the donor infant’s parents had read about Baby Jesse’s case.

“If proper channels weren’t followed, I don’t regret that,” Beaumont was quoted as saying.

Beaumont said the parents of Baby Frank, who was born on the same day as Baby Jesse, had agonized over whether to donate their child’s organs, and decided to do it on Monday after hearing about Jesse’s condition.

“I’m the one who made the initial contact out there,” said Beaumont, who said he was unaware of any other infant heart transplant program. “The more I hear of it, the more I think it was the right decision anyway,” he said, referring to the compatibility of the size and tissue types of Baby Frank and Baby Jesse.

Witte said that when she broke the news to the Donahue audience via a telephone call placed by the television program’s producers, she did not realize that the parents were unaware that a donor had been found.

Surprised by Show

“When I saw the show, I was taken aback,” Witte said. “I thought that maybe the doctors had already contacted them or that Donahue had told them. I thought I was informing only the audience.”

Ken Watson, program manager for the organ procurement program at the University of Louisville, where Baby Calvin is hospitalized, said his facility has also been confronted with requests by the family of a donor that the organ be given to a specific recipient.

“We tell them that the person may not be a suitable recipient or that someone else is more urgently in need,” Watson said. “We tell them that we prefer to use the system that has been set up.” He added that a donor’s family retains the right to bypass the system, but so far no one has chosen to do so.

Watson said the case illustradonors with recipients.

“It is essential for the natpeople have seen in the press,” Bailey spent more than an houprocess used by Loma Linda’s tracandidates. The committee has bedown Baby Jesse as a candidate because his parents are unwed and considered to lack the kind of stable home environment that medical authorities agree is essential if proper postoperative care is to be given an infant who has received a heart transplant.

“It’s not good enough to go off in a corner, take a Valium and hope it all goes away,” Bailey said. “Rejection (of the heart) drags the parents through an awesome experience every time it occurs. The family has to be very dependable.”

The committee subsequently accepted Baby Jesse as a candidate after the child’s parents agreed to transfer custody to his paternal grandparents, who were judged by the hospital’s transplant committee to be able to do the postoperative tasks of administering anti-rejection drugs, keep outpatient appointments and watch for subtle signs that the baby may be rejecting the new heart.

Bailey said the committee at first was unaware that both parents had large families, which could provide additional support. He added that the decision to turn down the baby initially involved other “confidential issues.”

Baby’s Best Interests

The committee, the surgeon said, must remain objective. “It’s easy to be emotional,” he said, “but everybody wants the baby to survive.”

In reply to a question as to what would happen if the committee learned that a parent had a criminal record, Bailey said, “That kind of information would be like waving five or six red flags in our face, particularly if we found that out ourselves (rather than have it come to the committee voluntarily).

“If we discover things along those lines, it is a pity that the baby has to be penalized for parents’ lack of responsibility.”

Gus Cheatham, Loma Linda’s vice president for public relations, announced that two infants who previously received heart transplants, Baby Rachel and Baby James, are currently in the hospital being treated for rejection episodes. Both are on intravenous medications to fight the rejection process.

Bailey previously has said that such rejection episodes can be expected for Baby Jesse beginning any time after one week following the transplant operation.

Harry Nelson reported from Los Angeles and Louis Sahagun from Loma Linda.