Today marks a very special day…25 years ago, Baby Fae, born with Hypoplastic Left Heart Syndrome, received a heart transplant. Back then, there were little to no options for a child born with HLHS as the Norwood had only been performed on a few babies without much success. Baby Fae’s transplant, done by Dr. Leonard Bailey (Carlie’s surgeon), has paved the way for MANY of our heart children. The 3 staged surgeries that are performed today to “repair” the heart were very new and still considered experimental. A successful heart transplant had never been performed on a newborn and parents with these special children were often told to take their babies home to die. Boston and Philadelphia were offering the Norwood procedure, followed by the Fontan (the Glenn or Hemi-Fontan was not being done at the time) but the statistics were not very promising. In a published study of 130 babies, 55 survived the Norwood and only four went on to have the Fontan, in which 2 survived! As a heart parent, I am thankful for how far research and technology have come and even more thankful to those parents and children who were the pioneers; many of our heat babies would not be here today if it weren’t for you!
Here is an article about Dr. Bailey and Baby Fae that was published in a local newspaper this morning…
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."
Bailey and his colleagues began experimenting with heart transplantation in animals in the late 1970s. "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 transplants, let alone in infants." 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."
On the morning of October 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. 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. Hodgkins watched Bailey being grilled at press conferences. His home was also picketed and 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 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." 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 October 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.
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."
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." 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. "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.
Events will be held throughout the year to mark the 25th anniversary, including Beauclair's first public appearance on October 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 February 27, 2010. "Stephanie's Heart," a 30-minute documentary about Stephanie Fae and Teresa Beauclair, will premiere at 4 PM Saturday, October 31, at Loma Linda University Seventh-day Adventist Church. It will air on PBS - KVCR Channel 24 - November 2 and 8, Monday at 7:30 PM and Sunday at 4:30 PM (You can see a trailer for the movie here...)
Monday, October 26, 2009
Wednesday, October 7, 2009
Single Ladies
So a little background...one of the dances performed at Caiteyn's dance studio is to Beyonce's "Single Ladies" and the girls have become so OBSESSED with singing and dancing along with the song that they are always asking me to put it on for them. The other night as the girls were dancing to the song for the twentieth time, I decided to pull out my camera. Every time I watch them do the “Single Ladies” dance, I laugh until I have tears (in a good way of course) and had to share with all of you...enjoy!
Sunday, October 4, 2009
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