Baby Fae' made heart transplant history 25 years ago at Loma Linda Medical Center
Monday, October 26, 2009
Twenty-five years ago today, the eyes of the world were on a baby girl who needed a heart. Some were critical, many supportive. And although Stephanie Fae Beauclair died 21 days after receiving a baboon heart, more than 500 young patients since have received heart transplants at Loma Linda University Medical Center. "The bottom line is Baby Fae's legacy is a strong one - there have been several thousand babies salvaged now who would not (have made it) otherwise," said Dr. Leonard Bailey, who headed the transplant team 25 years ago. "I think she sent word around the world that people should think about newborns, too." Research Bailey and his colleagues began experimenting with heart transplantation in "We got a lot of baseline data on how newborns do even without medications. They do better than my age," said Bailey, surgeon-in-chief at Loma Linda University Children's Hospital. He and other researchers knew they would deal with a "naive" immune system that would reject an organ at a different pace. Then, Swiss researchers sent them an experimental anti-rejection drug called cyclosporin. They did more research on animals and found those with heart transplants could grow and have babies. "Then we knew we were onto something - and how to translate that into real life for human beings?" Bailey said Thursday before an afternoon surgery. "No one was (talking) about doing heart They looked at primates, then narrowed it down to baboons because 80 percent of their DNA is the same as human DNA. Further lab tests revealed low reactivity between baboons and humans. "In Baby Fae's case her reactivity was even lower than her father's was to her," said Bailey, who lives in Redlands. "She responded quite weakly to the donor and that's how we selected the donor for her transplant." Surgery On the morning of Oct. 26, 1984, Bailey transplanted a baboon heart into "Baby Fae," born 12 days earlier in the Barstow area with a fatal condition called hypoplastic left heart syndrome. "The technical features of it all went well," Bailey said. "She was waking up, a couple days later she was off the ventilator, eating," he said. He and his colleagues had learned to administer cyclosporin to humans so Baby Fae would not reject her new heart. As she recovered, news spread around the world, bringing the media and protestors to the medical center. "The media scrutinized Dr. Bailey and everything he did," said Marie Hodgkins, a nurse who managed the cardiothoracic unit Baby Fae was on. The nursing staff was not prepared for the onslaught of attention, and the subsequent security measures. But Hodgkins' team focused on taking care of Baby Fae, and Hodgkins talked with Baby Fae's mother, Teresa. "Her goal and my goal was the room Baby Fae was in be just oblivious to what was going on - an environment where she could heal," she said. The outside environment was not so peaceful. Staff had to wade through picketers and the press, and had to show credentials to get into the unit, Hodgkins said. "I was trying to keep the unit as calm and basically as normal as possible," said Hodgkins, now director of patient care at Loma Linda University Heart & Surgical Hospital in Redlands. Staff also cared for the other patients on the unit, and Hodgkins said their families had to pass guards to get in and out. Passwords were changed so Teresa Beauclair could get into the unit. Hodgkins also watched Bailey being grilled at press conferences. His home was also picketed and Redlands Police kept watch on his family. "I'd look at him and see how tired he was - he was either up in the unit or sleeping in a bed (up there) so he could be there at the drop of a hat if need be," Hodgkins said. "I would sit there and listen to what he had to do to justify what he did," she said. "It was hard because I wanted to stand up and say, `Leave him alone - he needs his energy to take care of this baby.' " Bailey's concern was, after a few days of doing well, the baby's kidneys began to fail, then other organs, and her condition worsened. "The last thing that gave up on her her last day of life was her heart," Bailey said. "It was very disheartening to me and the rest of the team - it was not like any experience we had in the lab," Bailey said. "I don't know to this day what went wrong - but it's hard to attribute to rejection." Baby's Fae's unit had been flooded with cards and toys, some send by schoolchildren, Hodgkins said. "The public outpouring for good was phenomenal and what clinically was being done for this baby," she said. Closure A memorial service was held for little Stephanie Fae Beauclair at the Loma Linda University Church. "It was huge - it really helped to bring some closure to our organization," Hodgkins said. "She was an adorable baby we bonded with." Hodgkins finally had a chance to get to know Teresa Beauclair last year. "I said `Teresa, you are very aware, I hope, of what you started,' " she said. Beauclair, who chose anonymity at the time of the surgery, visited the unit where her baby stayed and will speak publicly for the first time on Oct. 31. "She said, `I never thought of that,' and I could see her begin to realize," Hodgkins said. Beauclair asked Bailey to continue his research, and he did, although he and his team would never do another "cross-species" heart transplant, partly because of new FDA regulations. "I do regret not replicating the Baby Fae operation - we could have done it better on the next one," Bailey said. More transplants In November 1985, Bailey and his team transplanted a human heart into "Baby Moses," who was from the Bay Area. "In those days those babies were set aside to die, and he was well along the way to dying when I discovered him," Bailey said. Baby Moses lives in Las Vegas and turns 24 in November. "He still has the same little heart ticking away," Bailey said. As Loma Linda University became known for pediatric heart transplants, staff did not have to go as far for donor hearts. The medical center does 15 to 20 a year, Bailey said. "It did get Loma Linda's name out there but I know that's in no way why it was done," Hodgkins said. "It was done to help babies." Hodgkins said Bailey and the other physicians want the parents to be involved in the decision making and want to give them options. "I've seen him do it and I see the dagger in his heart with those parents," Hodgkins said. Claudia and Jose Escarcega of San Bernardino have two sons who have received heart transplants at Loma Linda University Children's Hospital. "It's so hard when the doctor tells you to say goodbye to your baby. You think, I'll never see my baby again," said Claudia, whose son Gael, 8, got a heart transplant in September 2002 and son David, 11 months, got a heart transplant in July. Gael had one surgery, David had several. Claudia and Jose prayed and held onto their faith. "I don't know how God gave us the strength because it's not happy to have your baby in the hospital, for anybody," Claudia said. "We were confused and didn't understand, why two babies. But now we're happy because they're healthy." She said it was difficult hearing the hard news from the doctors, but now she and her husband are grateful. "Now we are thankful and we pray for them because they have a gift - especially Dr. Bailey, he has a gift," Claudia said. "A lot of doctors tell him not to do it, but he doesn't care, he does the surgery. "The only thing we can tell them is thank you and God bless you, because now we are so happy. Every day (David) looks better. He has to have two more surgeries, but we know he can do it." She said they are teaching Gael how to take care of himself so he can live independently. "Anything that happens to you, you're not alone, and they can do anything with disabilities," she said. She said medical center staff were supportive of her and her husband, who moved here from Mexico the year Gael had surgery. "When we came here, my husband and me, we were afraid, we didn't know anybody," she said. "When we moved into an apartment they helped us a lot. "We can say thank you to Loma Linda for helping with our babies, and this country. In Mexico one doctor told me, `Your baby's going to die,' and wouldn't help me anymore. Here they want to do everything for the kids." Present and future Bailey has also met some of his patients, many of whom have grown up, completed high school, married and had children. "For these little newborns it means a lifetime and I hope it's long. The system is not perfect - some just have a miserable time," he said. "For those that stay with the program and take their medication, there are many examples of them being (active) citizens." And Bailey keeps up with them. "Christmas time is a good time for me - I get cards, pictures, thank-you notes. It's very entertaining and refreshing," he said. His family has gotten past the "bittersweet" experience of Baby Fae, he said. Besides a police presence, their mail had to be opened for a year. "It seemed to call out a lot of extreme people and made our lives interesting for awhile," Bailey said. Aside from picketers, the region supported the operation, he said. "The whole Inland Empire was a great place to do this - the Inland Empire largely came to our rescue," he said. "The Redlands Police force was just magnificent and the whole area seemed to rise to the occasion." Organ transplant has become more sophisticated in the last 25 years, and Bailey said advanced immune system medicine is around the corner. "We're doing better than ever in history and are limited largely by a clear understanding of immunology," he said. A new advance would involve intrinsic acceptance, he said. No matter what the improvements, he said the medical center's transplant work still relies on organ donation. "The altruistic part is that society has to pitch in," he said, noting a little girl at the hospital Thursday might be in need of a heart. "It's tragic another baby or child has died, but the help to families who participate in donation develops closure to the loss they've had," he said. Transplants are only 5 percent of what the medical center does, but Baby Fae gave that work a face. "Any critic of what was done needs to look at the program," Hodgkins said. Honor and celebration Events will be held throughout the year to mark the 25th anniversary, including Beauclair's first public appearance on Oct. 31 as part of the centennial celebration of the Loma Linda University School of Medicine. The Children's Hospital Foundation's annual gala, "Got Heart," will feature some of the heart transplant patients on Feb. 27. "Stephanie's Heart," a 30-minute documentary about Stephanie Fae and Teresa Beauclair, will air on PBS - KVCR Channel 24 - Nov. 2 and 8, Monday at 7:30 p.m. and Sunday at 4:30 p.m. 
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