LLUMC Legacy: Daring to Care
PUSHING THE LIMITS: ON THE FRONTIERS OF HEART TRANSPLANTATION
Newborn Robbie Shinn was dying from kidney failure. He had been born with an underdeveloped heart and a rare, Type B-positive blood. The Southern California baby needed a heart transplant to survive. A donor heart with matching blood type and size might be impossible to locate in time to save his life.
As days passed and the baby's condition deteriorated, Robbie's parents, Charles and Renee Shinn, were devastated.
"You expect to take your baby home in two days," said Mr. Shinn. "We found out not only that our son was sick but also that he may be dying."
The Shinns shared their concern with friends and co-workers. Charles is a police officer with the Westminster Police Department.
Fellow officers began a campaign to find a donor heart, in hopes of saving the baby. They began wearing baby-blue ribbons under their badges, next to their hearts, in an effort to draw the public's attention. The news media loved it. The story received widespread publicity in both the print and broadcast media.
Finally, on Robbie's eleventh day, as he was on a downward spiral, word was received that an acceptable donor had been found. The Shinns were overwhelmed with gratitude, relief, and anticipation. The donor was a baby who had died of Sudden Infant Death Syndrome. The heart was donated by parents who were able to see briefly through their own grief, trying to turn their personal tragedy into something good.
Robbie was flown by helicopter from Children's Hospital of Orange County to Loma Linda University Medical Center, where he became its 142nd infant under six months of age to receive a heart transplant. The surgery, using a heart weighing about one ounce, took four and a half hours.
"Today he has a second birthday," said his mother after surgery. "He looks just great. He's so pink. He was real pale before. I can't wait to take him home."
"Few life events on earth exceed the realization of love, the miracle of conception, or the emotion of birthing," says Dr. Leonard Bailey, pioneer infant heart transplant surgeon. "Babies are naturally embraced by hope, by reflection of what can be, and by promises to keep; that is, unless the heart within a baby's breast is so poorly developed that life cannot go on. I have been driven by the notion that heart disease should not end the promise of a newborn infant. Heart transplantation restores the hopes and dreams surrounding these babies and, hence, ranks right up there with the best of life events on earth. It is a genuine re-birthing for a baby dying of heart disease, and the process is a very fine moment, indeed, for humanity. It is fundamentally good news, and while it may not necessarily even the score for all the tragedy facing our planet, saving a baby always makes a clear statement for what can and ought to be in the universe. As with the babies and their loved ones, my own life assumes new meaning and affirmation in the process. I am compelled by the belief that saving babies is the right thing to do."
Bailey, with a dream in his heart, pioneered the procedure that captured the fascination of the world, both the scientific world and the public.
In February, 1988, the Canadian Broadcasting Corporation interviewed Bailey for a "backgrounder" on Loma Linda. Loma Linda University Medical Center, had by that time, performed heart transplants on five Canadian babies.
The reporter asked, "Why not stop...let people catch up...let debate happen...let some new laws and standards be set, and then carry on?"
Bailey responded. "Well, that's reasonable, I think...and we could stop. If your baby tomorrow had hypoplastic heart disease, would you want me to stop...and wait around for the ethicists to make up their minds? I think the slant of public opinion is sufficiently in our direction, that we don't need to stop. Furthermore, I feel we are morally correct in what we are doing, so I'm not about to stop...." He was emphatic.
"Every time we look into the eyes of those little babies that have new hearts in them, we're convinced we're on the right track. When a baby dies, it just doesn't seem fair. Death never seems quite fair. But to begin your life with death...is a terrible tragedy...." And then he asked, "Aren't you ever interested about the possibilities of this little life...in 20 or 30 years...of wondering what could really come of all that? Just wondering about that, thinking about it, keeps you coming back."
In an interview with editors of the Loma Linda University SCOPE (July-September, 1989), Bailey admitted to being "a real patsy when it comes to looking into a baby's eyes and dreaming about the potential for this little person.
"We could have continued to let them die, I suppose. We've been doing that for years. However, when we can, we try to save them....
"That we take an interest in babies makes a real statement about us as human beings, about our way of life. We need babies; we need the statement that saving babies makes."
Regarding Loma Linda's statistics, Bailey said, "I'm convinced the Almighty has much to do with it. It's almost humanly impossible, given the condition of these babies. These were kids with incurable heart disease in all states of decompensation!
"From our statistics today, if you're a baby and have a heart transplant, you have an actuarial chance of being alive of about 87 percent at three years, better than you can say for most conventional heart surgery for complex disease."
Program Modifications
During the first two years of the program, Bailey sent a patient-transport team to bring prospective donor babies back to Loma Linda. The procurement and transplant took place in adjoining operating rooms. After two years, an interesting development took place in organ procurement that changed all that--multi-organ procurements. Now, at least two patients can receive life-saving organ transplants from one donor--conceivably, as many as eight.
Now, whenever a donor becomes available, a transplant surgeon goes to the donor hospital, removes the organ in cooperation with other organ procurement teams, and returns to Loma Linda. If the donor hospital is on the East Coast, the entire process could take all day.
This new development led to an interesting discovery--baby hearts can survive well for prolonged periods of time prior to transplantation. With adult hearts, the longest ischemic time--that is, from the time the organ is removed until it has been transplanted--was thought to be about four hours. With baby hearts, the "safe" ischemic time is at least 10 hours. This means that Loma Linda's transplant surgeons, flying in a chartered jet, can procure hearts for babies from anywhere in North America and the Hawaiian Islands. Loma Linda University Medical Center has literally opened the state of Alaska for organ procurement. One transport team traveled all the way to Nova Scotia to save a baby in Loma Linda.
Another improvement in the program has been to bring the prospective recipients, at least those from far away, to Loma Linda before a donor has been located. This change in procedure has avoided the delays and red tape experienced by Alice and Gordon Holc in arranging last-minute transportation to Loma Linda. Ann-Marie Gagnon, from Quebec, Canada, was notified of an available heart for her daughter, Genevieve, at 2 p.m. one day. By 4 p.m. they had been whisked through customs and immigration, escorted by the Royal Canadian Mounted Police, and had boarded an Air Canada jet for California. Bringing the babies to Loma Linda well in advance of a possible heart transplant has reduced the stress for all concerned.
A significant contribution to the program has been the cooperation of the United States Air Force, particularly officials at Norton Air Force Base, a Military Airlift Command base, about 10 minutes by ground ambulance from Loma Linda. Norton Air Force Base (now San Bernardino International Airport) granted landing and take-off privileges for air ambulances chartered by Loma Linda University Medical Center. Norton Air Force Base granted clearances for all non-military, medical emergency flights in life-and-death situations.
The Air Force was a vital part of the team effort that goes into making a transplant successful. And it has been of mutual benefit. Several of the transplant babies have been military dependents--two of them coming from England.
"Becca"--Kimberly's Little Sister
Another historic surgery involved one of these cases. Captain Chris Ross's daughter, Rebecca, not only had a defective heart, but her heart also was growing on the wrong side of her chest. This transplant was another first. Rebecca, the granddaughter of Georgia Tech head football coach, Bobby Ross, was also the first baby to be flown from Europe for a heart transplant.
Rebecca had been born to Ross's wife, Deeann, on December 14, 1988. "Becca," as she was called by her "big" sister, two-year-old Kimberly, was born with a bluish tint at the military hospital at Royal Air Force Upper Heyford.
Chris and Kimberly watched through a window as Rebecca was given her first physical examination. It seemed to be excessively long. Chris knew something was wrong when four or five doctors and nurses crowded around the newborn.
A chest X ray revealed that Rebecca's heart was on the right side of her chest instead of the left. By now, the base hospital staff knew they did not have the facilities to handle her case. They transferred mother and daughter to John Radcliffe Hospital in Oxford.
Chris says that Kimberly probably wondered why she was getting so many hugs from her daddy. He took her to friends and made some difficult phone calls, changing good news to uncertainty.
Chris received emotional support from his commander, Lieutenant Colonel Dave MacGhee and his wife, Kathy, who came to the hospital to be with Chris at midnight.
The next morning, doctors gave Chris and Deeann the bad news. Their daughter had a three-chambered heart. Her aortic valve was not completely formed and her aorta was too small to support life. And there were other problems with her heart. She would not live long. Their daughter had four options--two different surgeries (that the surgeons gave Rebecca less than a 10 percent chance of surviving), a heart transplant, or taking her home to die.
On Thursday night, December 15, Dr. Ces Ferrar, one of the Air Force doctors, came to talk with the Rosses. He wanted them to understand what was happening. He reported that the Air Force doctors felt the only place that would even consider Rebecca would be Loma Linda University Medical Center.
The next day, the Rosses asked Dr. Valerie Harpin, a pediatric cardiologist, to contact Loma Linda. They expected bad news, but instead learned that 27 infants had undergone heart transplants, and 23 were alive and well.
Through Joyce Johnston, R.N., Loma Linda's senior heart-transplant coordinator, Chris talked with some of the families late that night and found them to be extremely upbeat. They had nothing but good to say about having the transplant. The Rosses were encouraged.
Vital information regarding Rebecca's status was faxed to California, and Rebecca tentatively was found to be an acceptable candidate for heart transplantation.
Chris's commander authorized a medical evacuation to California, and a plane was ready at 2:30 the next afternoon. The hospital worked with the United States Embassy in London to allow the baby to leave Britain and enter the United States without a passport. A huge C-141 "Starlifter" flew the baby and her family to Andrews Air Force Base in Maryland. The Rosses had left behind everything and everyone and were on their way to a place they knew very little about.
At Andrews they transferred to a C-9 medivac aircraft and headed for Norton Air Force Base, near Loma Linda. They arrived at the Southern California base at midnight, 14 hours after leaving England.
On Christmas day, the Rosses received a very nice present. Their daughter, Rebecca, was officially placed on Loma Linda's infant-heart-transplant list. A North American search for a donor had begun.
Since their arrival a week before, two babies had received new hearts and were doing well. Within the next week, another two babies underwent the surgery. But Rebecca's new heart did not come for another four weeks. In the meantime, the baby started to deteriorate.
There was considerable interest in Rebecca by the news media in Atlanta, Georgia, where the paternal grandparents lived. The Pentagon also called for updates. The Rosses went public, asking for assistance in locating a donor. Although their pleas did not directly help Rebecca, they feel that they helped by increasing the public's awareness of the need for donors.
On the morning of January 31, 1989, Joyce Johnston called and said the transport team was leaving to get Rebecca's new heart. At 6:30 p.m., Bailey arrived in the operating room with the donor heart. Five hours later the surgeon met with Chris and Deeann and reported that Rebecca was a fighter and that she was doing very well. They would be able to see her in about an hour.
The next day, Rebecca was able to look around and stay awake for much longer than she had before the surgery. It was as if she had been born again, Chris later reported. The Rosses have a photograph of Rebecca sleeping in her recovery room with the picture of an Air Force jet fighter in the background. It is signed by Captain Ross's unit and says, "To Rebecca--Our prayers are with you."
Rebecca recovered quickly and was released from the Medical Center 10 days after the transplant. Tragically, Rebecca died at home suddenly on March 4, 1990, from heart-rhythm disturbances, which possibly were caused by rejection. During the 14 months after her transplant, her loving family and the transplant team got to know her well. The untimely death was devastating to all, and pointed out the risks and realities of practicing medicine on the frontiers of science. Out of gratitude for the international effort to save their daughter's life, Chris and Deeann Ross helped to organize a foundation, "New Hearts for Kids," to financially help the parents of future infant-heart-transplant patients.
Hospitals every day are involved with emotionally charged, life-and-death issues. This is perhaps particularly true of university medical and research centers that are frequently pressing scientific and technical limits in their quest to improve healthcare. Some of their programs capture intense public interest. By the fifth anniversary of Baby Fae's transplant surgery, Loma Linda University Medical Center had collected 60,000 news clips about the Medical Center from around the world, in a number of different languages.
In May, 1990, Loma Linda University Medical Center became the only California hospital to be approved by Medi-Cal and California Children's Services to perform pediatric heart transplants. In a letter of approval, T.G.G. Wilson, M.D., Chief of the Medical Policy Section of the Medi-Cal Benefits Branch, wrote to Bailey, "We much appreciate your dedicated efforts on behalf of all the children you treat and your interest in serving Medi-Cal and CCS beneficiaries. We look forward to a long and cooperative relationship."
The agreement also approves hypoplastic left-heart syndrome as a condition to be treated by heart transplantation. More than half of the babies receiving heart transplants at Loma Linda have had this anomaly.
The approval process, taking almost two years, was complicated by the fact that Loma Linda was plowing new medical ground and had to prove the viability of the procedure itself, in addition to establishing the Medical Center's qualifications as California's fourth heart-transplant center.
In early 1989 Bailey recruited Steven R. Gundry, M.D., to become one of his associates in cardiovascular surgery. With his background and training in pediatric heart surgery (gained at the University of Michigan and the Great Ormond Street Hospital for Sick Children in London), Gundry joined the pediatric transplant team as part of his broader clinical and teaching responsibilities.
In March of 1990, the Loma Linda International Heart Institute conducted an international conference on pediatric heart transplantation. It was attended by heart transplant surgeons, pediatric cardiologists, general pediatricians, immunologists, transplant nurses, and related personnel. Of the 475 participants, 111 came from 24 countries including: Argentina, Australia, Austria, Belgium, Brazil, Canada, Colombia, England, France, Germany (East and West), Holland, Italy, Japan, Korea, Poland, Portugal, Russia, Saudi Arabia, Scotland, Sweden, Turkey, Venezuela, and Yugoslavia. Participants also came from around the United States, including delegations of up to eight persons from the Mayo Clinic, Cleveland Clinic, Duke University, Yale University, Stanford University, and several children's hospitals.
The conference was designed to foster professional growth through the collective exploration of scientific data, clinical management techniques and strategies, and relevant ethical issues. A second conference was held in March 1995. Both conferences were detailed in The Journal of Heart and Lung Transplantation.
In 1991 Anees Razzouk, M.D., a talented 1982 graduate of the LLU School of Medicine, joined the heart transplant team. Razzouk, a protégé of Dr. Bailey, studied thoracic and cardiovascular surgery at LLUMC between 1987 and 1990. He joined the team after completing a fellowship in pediatric cardiovascular surgery at the Hospital for Sick Children in Toronto, Canada. He is now chief of the Division of Cardiothoracic Surgery.
On January 28, 1994, the transplant program was the subject of a double segment on ABC's news magazine, "20/20." Cohost Hugh Downs told the story of Austin Peterson, a 22-day-old infant who received a new heart on August 1, 1993. On May 9, 1994, the incredible story of Paul Holc (see Chapter 1) was dramatized by NBC in an emotional, two-hour, made-for-television movie, "Heart of a Child."
The interest continued. On January 17, 1995, the program was the subject of a two-hour documentary by CBS News in a feature, "Before Your Eyes: A Heart for Olivia." It told the story of Olivia Lauren Kaitlyn Maize, the youngest heart transplant patient in the world, who underwent anesthesia at 1 hour and 40 minutes of age.
As of November 2004, the heart transplant team had performed 255 heart transplants on babies under six months of age. All would have died without the delicate surgery.
Loma Linda's infant-heart-transplant program has captured the attention of the world, probably because everybody loves babies, and, in general, most people have an interest--maybe even a fascination--with the heart. Our human survival instincts cause us to do whatever we can to defeat death and to cheer whenever death is cheated.
When six-month-old Dylan Stork flew home with his parents, Mario and Tracy, to Blackfalds, Alberta, Canada, he was met by fireworks and dozens of relatives and neighbors. He was wearing a slender gold Medic Alert bracelet, identifying him as a "Heart Transplant Patient," and a shirt which read, "I Left My Heart in Loma Linda."