Heart Transplant Patient, 2, Dies Despite Team Effort

LOMA LINDA — Despite an extraordinary effort to save his life, a 2-year-old boy who was born with a dime-size hole in his heart died Thursday, five days after receiving a heart transplant at Loma Linda University Medical Center.

Jason Jenette, whose fight for survival was aided by a medical team from Children’s Hospital of Orange County, had been in a coma for 24 hours before he was declared brain-dead and detached from his life-support system, said his surgeon, Dr. Anees Razzouk.

The child’s parents, Jason and Darlene Pacheco of Hawaii, were at his side.

“Jason gradually deteriorated in that he became more unresponsive and he drifted into a deep coma,” Razzouk said. “The hope for a meaningful and functional life for Jason was gone.”

“As of 11 o’clock this morning, Jason is no longer with us,” he said. “Jason primarily died a brain death. His heart kept on beating until the last minute, when we discontinued support.”

Tests on Wednesday revealed that Jason had suffered extensive brain damage, a complication sometimes associated with extensive use of the kind of heart-lung bypass equipment that had kept him alive for 11 days, Razzouk said.

The child’s death sadly ended a dramatic effort.

“We are devastated that he died. I feel horribly for the family,” said Bianca Tilling, one of the nine-member CHOC team that went to Hawaii and transported Jason back to Orange County, where he received initial care before the transplant.

Jason, who would have turned 3 next month, lived with his parents in Pepeeko, Hawaii. An active child, despite being born with a congenital heart defect, he underwent surgery on May 27 at Kapiolani Medical Center in Honolulu to close the hole in his heart.

However, when it proved impossible to revive his heart after the operation, doctors made plans for Jason to get a heart transplant in California because that procedure is not available in Hawaii.

CHOC sent its team of medical personnel to Hawaii along with a heart-lung machine developed by the hospital. But the child could not be transported to the mainland by commercial airliner because he was hooked up to the large bypass machine.

Then the Coast Guard stepped in to help, carrying the boy and the medical team on a C-130 Hercules cargo plane during a 7 1/2-hour trip from Honolulu. Jason stayed at Children’s Hospital in Orange until a donated heart became available. He was taken by van to Loma Linda University Medical Center for the transplant last Saturday.

“When Jason arrived June 5 at our medical center, he was in definite need of a new heart. But more than that, he desperately needed a miracle,” Razzouk said.

Jason had to remain on the heart-lung machine after the 5 1/2-hour surgery Saturday night and was listed in extremely critical condition because of lung congestion, but his lungs had improved enough by Tuesday night for him to be taken off the medically risky equipment and maintained only on a ventilator.

The child began moving and opening and closing his eyes, but suddenly brain damage occurred, apparently from hemorrhaging.

“I think we were 95% of the way to getting this child through,” said Dr. Leonard Bailey, surgical director of the heart transplant program at Loma Linda. “It was a major rescue effort, and we just missed.”

Others who tried to help Jason also felt the loss.

“When I rode with him from Hawaii, we held his hand and stroked his head, and he responded to us,” said CHOC’s Tilling. “And then on the ambulance to Loma Linda, he was awake and sedated, and we told him, ‘They have a heart for you, Jason.’ ”

Dr. Judson McNamara, who headed the team that operated on Jason’s heart in Honolulu, said he has stayed in touch with the staffs at CHOC and Loma Linda since the toddler’s arrival.

He said that until Wednesday, when he heard that Jason’s brain was hemorrhaging, he also thought the boy had a good chance to survive.

“We are all very saddened that Jason went all the way with us and just couldn’t quite make it over the hardest part,” he said.

U.S. Coast Guard Petty Officer William Atkinson, who, with his family, brought Jason a large teddy bear when he was staying at CHOC, said: “I have two sons of my own, so I got kind of close to the family in this case. It’s hurting right now.”

Atkinson said he had last talked to Jason’s parents Tuesday night, when Jason was taken off the artificial lung.

“They were in an optimistic mood,” Atkinson recalled. “It was a step in the right direction. We were all hoping and praying.”

Jason’s hospital expenses are being paid by Hawaii Medicaid, according to sources familiar with the case. California prohibits hospitals from disclosing the medical costs of patients on Medicaid or Medi-Cal, according to officials at CHOC and Loma Linda.

While declining to discuss the exact cost of Jason’s heart transplant, Loma Linda officials said that such operations usually cost between $120,000 and $150,000.

CHOC officials refused to disclose the daily cost of keeping Jason on the heart-lung bypass machine but said the compensation the hospital receives from Medi-Cal “does not cover the actual cost.”

The heart-lung bypass machine “is the most expensive service CHOC provides,” said Kim Ely of the hospital’s business department.

* HEART TRANSPLANTS: Children’s survival rate is 72%, but donors are scarce. A22