In November 1989, Alyssa Smith lay sedated in a tiny bed at the University of Chicago Medical Center. Not yet 2 years old, she had undergone a surgery--the first of its kind--that drew an entire country's attention. Alyssa needed a new liver. However, at that time patients who required liver transplants had no other option but to wait for cadaver donors. This created an especially long waiting list for infants because they could only receive organs from other young donors closer to their size; adult livers were too large to fit their bodies.
When Alyssa went on the transplant list in 1988--at less than a year old--the list had grown to 700 infants in the United States alone. Approximately one-third of all children, including half of all infants, placed on liver transplant waiting lists at the time died while waiting to get a donor organ, according to J. Richard Thistlethwaite, MD, professor of surgery and a Medical Center transplant surgeon.
But Christoph Broelsch, MD, then chief of the Medical Center's liver surgery service, was working on an idea that might take some pressure off those waiting lists. A few years before Alyssa's surgery, he became the first surgeon in the United States to transplant a section of a deceased donor's liver into a child. His next project: to split a cadaver liver in two and transplant the halves into separate children. Again, the operation proved successful.
Broelsch was working toward something that, to many people, may have seemed ludicrous. Because the liver can regenerate, he reasoned, why not take part of a healthy, living adult's liver and transplant it into a child who would otherwise have to wait for a cadaver liver?
"Our goal was not only to do the procedure, but to develop a concept on when a living donor liver transplant ought to be done, why it should be done, and what the ethical implications are," he wrote in a Medical Center report in 1990. In papers, Broelsch described the procedure; he attempted it in animals with positive results. But when surgeons in Brazil and Australia jumped to operate on emergency patients without Broelsch's oversight, the recipients died.
"Broelsch was one of only a few people who were working on this idea at the time. However, he was the. only one to thoroughIy and systematically evaluate the procedure including proof-of-principle experimentation in animals, ethics consultation, and public announcement of the planned procedure with request for comments," Thistlethwaite said.
The university's transplant team took serious precautions. They spent a year developing the program and set out to approve a small group of patients for the initial trials. "If successful," the Associated Press reported in newspapers across the country, "the operation at the University of Chicago would provide a solution to a severe shortage of organs for children who need transplants."
San Antonio to Chicago
Hundreds of miles away, Alyssa's parents in the San Antonio suburb of Schertz, Texas, were trying desperately to keep their youngest child "as healthy as possible. At 11 weeks, physicians had diagnosed Alyssa with biliary atresia--the most fatal liver disease among children. The bile duct between the liver and small intestine is blocked or absent, pushing bile into the liver and blood stream.
"We knew she'd have to be transplanted if she even made it to that point," Teri Smith said of her daughter Alyssa, who was in and out of the hospital multiple times during those early months of her life.
However, Teri and her husband John--both in their twenties--tried to maintain a normal life as they added Alyssa's name to the organ transplant registry and prepared themselves for a long wait. Alyssa was never in critical condition, but physicians warned Teri and John that the disease could turn for the worse at any moment.
The Smiths didn't let the potential negatives disturb them. "Emotionally we're a very grounded family," Teri said. "We say, let's get the job done. Let's get (Alyssa) the best treatment." Aside from her daily medications and medical check-ups, Alyssa was a typical infant. She met verbal and physical development standards and ate normal foods. The Smiths continued to work, and left Alyssa with a babysitter daily.
That is, until the day in August that a San Antonio physician presented a different sort of treatment option. He told the Smiths that the University of Chicago had published an article in the New England Journal of Medicine about a new procedure for living donor liver transplants and the ethics involved.
The university ethicists decided that the risk for the donor--an otherwise healthy individual--was the procedure's most controversial aspect. There existed general surgery risks--infection, allergic reactions to medications and anesthesia. However, the donor's chance of death was near zero, and the chance of complications less than 5 percent.
For the recipient, the benefits well outweighed the risks. A transplant from a living donor meant that the recipient wouldn't have to risk infection or death while waiting for a cadaver organ. It also meant that the recipient would likely be healthier at the time of transplant, which would lead to better outcomes over time.
"From the minute we heard about it, we knew we wanted to contact them," Teri said.
New Frontiers in Transplant Surgery
Over the next few months, the transplant team, an internist and psychiatrist all evaluated Teri to ensure she matched Alyssa's blood type and that her liver met healthy standards. Teri also signed two informed consent forms verifying that she knew of all the potential risks involved but wanted to undergo the surgery regardless.
Meanwhile, the Smith's family, friends, church and coworkers busied tbemselves raising money. The people closest to them wanted to make sure the Smiths had enough to cover incidentals--flights, babysitters and funds lost from being out of work during the surgery and recovery. "Alyssa and Teri were just the right patients to begin with. I never forget their trust and confidence in our ability to do the right thing," Broelsch said. Later, after operating on many other patients, Broelsch said he "grasped the tremendous courage of these people and the enormous trust to put their lives in the hands of a few people." He called Teri the story's hero, and credited her courage to "American pioneerism in her blood."
Teri remained calm as she packed suitcases for herself and Alyssa. They would be gone for six weeks, from November through January, but Teri didn't let that bother her. It was simply fact: Alyssa needed a liver, and Teri was going to give her one--or at least part of one. There was nothing to worry about, Teri told herself. But as their pIane flew north from Texas, Teri became airsick, despite having flown multiple times before without incident. On the morning of the surgery, as Broelsch ate breakfast at home with his wife, Bianka, the newscaster on the radio announced that the University of Chicago would be conducting the first living liver transplant procedure between a mother and her child that day. "Isn't that your procedure?" Bianka asked casually, eyeing Broelsch. "I believe you have to go now."
The Smiths arrived at the Medical Center on November 26, 1989. At 7:30 a.m. on November 29, Broelsch escorted Teri into the operating room. "(We) were at the same time calm and excited with anticipation because of the extensive preparation that had gone into initiating the living donor program," said Thistlethwaite, who assisted in the operations.
The Medical Center's communications office arranged for radio and television stations to tape the procedure. "This was quite unusual, but since so many efforts went into the preparation, we had no objections to this kind of publication--in particular, because the hospital administration was extremely supportive in many ways. Thus, the team was calm, well organized and mentally prepared." Over 13 and a half hours, surgeons removed Alyssa's liver in its entirety and replaced it with one-third of her mother's--specifically the left lobe. By 9 p.m., Alyssa's new liver was in place--the artery, veins and bile ducts sutured, and the organ functioning.
As Teri and Alyssa recovered in the Intensive Care Unit, their family, friends, surgeons, nurses and the rest of the world waited. Though the Medical Center team had found a low likelihood of any danger; nobody knew for certain how the operation would turn out.
Alyssa's older brother was there for the transplant, and other famiIy members flew in and out over the weeks following the surgery. Media from across the country. among them the New York Times and National Public Radio, covered the story. First Lady Barbara Bush called to wish Teri well. And later, when reporters asked her how she had decided to risk her life for her daughter, Teri responded, "Once you've given someone a big piece of your heart, it's easy to throw in a little bit of liver."
Going Home and Growing Up
Alyssa remembers none of this. She knows only what she has read in newspapers, seen on television and heard in stories. "I knew that I had a scar and other people didn't, but we were raised as normal kids, as normal as possible," she said, referring to herself and her brother.
The Medical Center faculty and staff, however, do remember. "Afterwards there was a sense of elation because of the successful operations, but also relief to have achieved a long-anticipated goal," Thistlethwaite said.
Broelsch agreed: "While we performed the first one in the United States and subsequently 20 others at the University of Chicago, the ground was laid to expand into the world." The operation went smoothly except for bleeding from Teri's spleen, which had to be removed. The six weeks the Smiths spent in Chicago recovering led to sad and heartfelt goodbyes as Teri invited the entire team to Alyssa's graduation (to take place 16 years later). They headed back to Texas.
Drums boomed and horns blared as Teri and Alyssa deboarded the plane. The school district marching band had come to welcome them home, and Teri returned to work at little Wiederstein Elementary School a few days later. Each week when she had to leave her fourth grade class in order to take Alyssa to the hospital for lab work, the school's principal substituted so that Teri didn't have to find some else to cover for her. "We come from a small community. Everybody knows everybody. It was a really big deal in our town," Teri said.
Twenty years later, Ted said she rarely talks about the transplant anymore, though it never leaves the back of her mind. "It's gotten to the point that I forget that many people in our lives don't know. I'II mention something in passing and they'll say, 'Wait ...what?!'
In high school, Alyssa played clarinet in the same band that greeted her when she returned from Chicago. She joined sports learns and took dance lessons. Sometimes, she and Teri spoke about their transplant experience at organ procurement conferences or meetings, but those engagements have slowed down significantly.
In May 2006, Alyssa graduated high school. And Broelsch, who left Chicago to return to a university in Germany, wrote to congratulate her. He said he encouraged Alyssa to "forget about the past and look upon her future as a complete normal, charming individual, because she really looked great and beautiful in her photograph." Alyssa said "It was really cool to get that letter because I don't remember meeting him. Teri added that her daughter "is getting to an age where she's just starting to understand the magnitude of it."
The overall experience "doesn't play a major role (in my life) anymore, but it has shaped my career choice," Alyssa said. She'd like to someday open a support facility for children who have undergone transplants and their families. Citing high levels of stress and divorce rates among the parents of transplant children, Alyssa said, "That's my big passion--the kids."
Though she has a year of school left at Meredith College in Raleigh, N.C. (where she majors in social work and minors in dance), Alyssa speaks passionately and rapidly about her plans. She envisions the center as a place children can feel comfortable hanging out and meeting other kids, where siblings of transplant patients can meet other siblings who have been through the same thing, and where parents can talk to other parents without any "doctor jargon."
"It all sounds good in my head," Alyssa said, "but we'll see." Alyssa's own experience in support groups in Texas inspired her. One offered college scholarships to high school teenagers who attended a certain number of meetings. The group arranged trips to plays and other events that many families could not otherwise afford after transplant surgery expenses; they also discussed the importance of complying with medications in order to survive (a serious challenge with teens).
Alyssa started out on prednisone and cyclosporin, but by age 5 physicians took her off the prednisone and by 15, she was able to stop taking medications altogether.
The Smiths also visited with other families through the program who were in the early stages of the transplant process. "We'd show them that you can have a normal life. We'd say, 'right now maybe isn't that great, but it will get better,'" Alyssa said, adding that the parents have to work at their relationship as a couple all the while making sure they're not losing focus on any of their other children.
The experience has changed the Smith family, and it has changed the Medical Center as well. Thistlethwaite said that because of living donor transplantation, the incidence of infant death while waiting to receive transplants has fallen to below 2 percent at the Medical Center.
He added that the transplant program "became the preeminent referral center for pediatric transplants, with families traveling from throughout the United States and the world to receive care here." Surgeons from far corners of the earth also come to the Medical Center to train in living donor liver transplantation, learning essentially the same techniques that Broelsch developed two decades ago. Broelsch said that he believes the procedure and the ethical protocol that the Medical Center team created have "changed transplant surgery to a great extent." He added that former critics have incorporated the procedure and helped expand it for adults. And in Texas, where a family first believed in Broelsch and decided to put their lives in his hands, life goes on.