Waiting for a Miracle

Kelli would die without a heart-liver transplant. But insurance refused to pay, and hospitals refused to take her.

Medical Struggles

Kelli Jaunsen was about to turn 20, in 2003, when she got the worst news of her life: To survive, the young woman with the auburn hair and heartbreaker’s smile would need a new heart and a new liver. What’s more, her health insurance plan refused to pay for the million-dollar surgery. “They gave her a death sentence,” says her father, Robert Jaunsen. Most of the hospitals in California where the family lived were reluctant to consider such a risky procedure. Frantic at the thought that anything would stand in the way of Kelli’s survival, Robert resolved to do whatever it took to save his daughter. That’s when miracles started to happen.

Kelli’s medical struggles began on December 7, 1983, the day she was born, in Chula Vista, California. She was cyanotic—there wasn’t enough oxygen getting to her blood, causing her to turn blue. This can signal many conditions, some of which are more serious than others. But “no one gave us any kind of alarm,” says Kelli’s dad. In fact, her parents only learned Kelli had a serious heart condition by chance. When the baby was about three months old, her mother, Ana, took Kelli and her older brother, Chris, to visit family in Guadalajara, Mexico. On the airplane, Kelli’s breathing became very labored.

When they arrived, Ana’s sister took them to the air force base in La Paz, where her husband was commander. One of the physicians there examined Kelli and discovered that something was wrong with her heart. “They told me it was really serious and that she probably wouldn’t live that long,” says Ana. “But I thought, No! My daughter’s a fighter. She will stay alive.”

Back home, the Jaunsens finally learned that the right side of Kelli’s heart was drastically underdeveloped (both the atrium and ventricle). And there was a large hole between the two sides. As a result, blood that should have been circulating through Kelli’s lungs was going straight into her system without being properly oxygenated.

When she was 11 months old, the tiny girl had her first heart surgery: creating a shunt to increase oxygen to her blood. Doctors emphasized that this was only a temporary “Band-Aid.” When Kelli was nearly three, she had open-heart surgery to create an artificial viaduct that allowed blood to bypass the poorly functioning right ventricle of her heart yet still get to her lungs. It was a longer-term fix but by no means a cure.

The second operation, however, nearly killed her. After developing a dangerous infection, she went downhill so fast that the hospital staff thought she wouldn’t survive. At one point, they even talked to Ana about taking Kelli off life support. Horrified, she refused. “I started singing to Kelli and talking to her,” says Ana. And gradually, the frail little girl improved.

The Bad News

Through the rest of Kelli’s childhood and teenage years, her life alternated between medical emergencies (including suffering a mild stroke and having a pacemaker implanted) and stretches of semi-normalcy. She attended public school and tried to make friends with kids her own age. Yet even during the good years, Kelli was too sick for much physical exertion. When other kids ran around on the playground, she had to stay on the sidelines. “Kids didn’t really understand what was going on with me,” she says. “They thought I was weird.” So she tended to spend time alone or around adults, whom she could talk to more easily than kids her own age.

Kelli also related well to animals. After her family moved to Palm Desert, California, when she was 15, she’d spend time at the nearby Living Desert Zoo and Botanical Gardens to observe and photograph roadrunners, coyotes, Mexican wolves, a bobcat and even a reticulated giraffe. At home, she doted on the family cats, particularly her favorite, a black female named Lulu. Occasionally, Kelli had more unusual pets, like a spindly praying mantis. “It would eat from my hand,” she says. “I had no idea an insect could recognize me. But it did. It was really cool.”

In 2002, things got much worse for Kelli. She developed ascites, or fluid in her abdominal cavity. This meant her liver wasn’t working properly—a consequence of her heart defect and the procedures that had served as temporary fixes. The fluid was causing Kelli pain and had to be surgically drained frequently.

Finally, in October 2003, Kelli’s cardiologist broke the bad news: Her liver was failing. She needed a liver transplant as well as a new heart if she was going to survive. Heart-liver transplants are both difficult and rare—only about 50 people in the United States have had this double transplant. Plus, the few hospitals equipped to do the surgery are extremely selective about whom they take. The patient must be sick enough to need the transplant yet not so sick that she’s unlikely to live through the hazardous procedure. Kelli hovered perilously on the borderline.

When her cardiologist began making inquiries, several hospitals turned him down right away. Only UCLA Medical Center even agreed to evaluate Kelli. For the next seven months, UCLA put Kelli through a complex battery of exams and tests, both physical and psychological—and then turned her down. The deal breaker was Kelli’s high level of antibodies, which meant the likelihood that her body would reject a transplant was also very high. Kelli and her parents were devastated. “We had no reason not to believe that they were going to take her,” says Robert. “It was a really big shock.”

A Good Samaritan

There was also the problem of insurance. At the time, Kelli was covered through California Children’s Services (CCS), a state-run program for chronically ill children whose family has a yearly income less than $40,000. The Jaunsens qualified because Robert, a former deputy sheriff, had suffered two massive heart attacks and was forced to retire on a small pension. But while CCS had previously paid for everything, it didn’t cover this type of double transplant.

Robert decided to take action. “My heart attack was a blessing in disguise,” he says, “because it let me really be here for Kelli.” He helped her launch an Internet site, and friends came up with ideas for auctions. “But there’s only so much you can do,” says Robert. “You can’t raise that kind of money through car washes.” So he turned to the media. In February 2004, the Los Angeles Times ran an article about a plucky girl who needed a double transplant. Some people wrote in to say that they would donate money, but the amount was minimal.

Then a miracle happened. After the article appeared, a Good Samaritan, who wishes to remain anonymous, came forward and offered to pay for the surgery. At first, the Jaunsens couldn’t believe it. But it was for real.

“Now we just had to find someone to do the surgery,” says Robert. In the Western United States, that left Cedars-Sinai Medical Center. In June 2005, when Kelli went to Cedars-Sinai, the team was daunted by the prospect. “She’d just been turned down by one of the largest transplant programs in the world,” says Lawrence Czer, MD, medical director of the Heart Transplant Program. But Cedars had already done one high-risk heart-liver transplant, and it had been so successful that the woman went on to run a marathon.

Dr. Czer was the first to interview Kelli. “She was scared,” he says, “but she was a hero.” After several rounds of tests, Dr. Czer and heart transplant surgeon Alfredo Trento, MD, concluded that Kelli’s case was high risk but possible. “The question was, how can we get around all the problems and be able to help this young woman who should have her whole life ahead of her?” says Dr. Czer. The heart team had several intense meetings and eventually voted yes. “But we had to get the liver team to buy in too,” says Dr. Czer.

Steven D. Colquhoun, MD, the surgical director of Cedars-Sinai’s liver transplantation team, says the staff agonized over the decision. “Being a parent,” he says, “I identified with Kelli’s dad, who made this his mission. I have a son, and if he needed anything, he could have my whole liver. So meeting Kelli and her family was very compelling.” In the end, the liver team also said yes.

Miraculous Recovery

Kelli was put on the transplant waiting list on November 30, 2005, when she was 21. “Being on the list is no guarantee of getting an organ in time,” says Dr. Colquhoun. The problem is that the number of patients who need transplants greatly exceeds the number of organs available. “So people die on the list,” he says. In fact, about 18 patients die every day waiting for organs.

There was nothing to do but wait. Doctors told the Jaunsens that Kelli could survive for about a year without a transplant. But as the mark approached, the family and the Cedars team were nervous. No one knew when the balance might tip and Kelli would become too sick for the surgery. “The fear was constant,” says Robert, who slept on a cot outside Kelli’s bedroom so he could hear the slightest sound she made during the night. “Every morning,” he says, “the first thing I’d do was check to make sure she was breathing.”

The waiting finally paid off on February 1, 2007, one year and two months after Kelli had first been listed. Robert Jaunsen got the call on his cell phone at about five in the morning. “This is it,” Robert said when he woke Kelli. “We have to go.” But suddenly, after years of being the brave girl, Kelli was terrified. “I grabbed my cats, wrapped myself in my sheets and said, ‘I’m not going.’” Then she started to sob. “I kept thinking most likely I’ll die during the operation,” she remembers. Of course, Kelli would definitely die without it. But in that emotional moment, logic went out the window. “They almost had to carry me out of my room.”

In the end, Kelli picked herself up and walked with shaky dignity to the car. The Jaunsens made the 130-mile trip in a little over two hours. “We put Shania Twain on the CD player,” says Robert. And as they drove through the pale desert landscape, a huge winter moon glowed just above the horizon. “The moon was the thing that calmed me down,” Kelli says. “It sounds weird. But it was pointing the way, saying it’s going to be fine.”

The first half of the operation was performed by the heart team. Then, once the heart was in place, the liver team took over. Even by transplant standards, says Dr. Czer, it was tricky. “With congenital heart disease, the blood vessels are huge, because of the pressure. So it was like operating in a minefield.” Plus, Kelli’s blood would barely coagulate because of liver problems, so there was the risk that any bleeding couldn’t be stopped. The surgery lasted 18 hours, and then Dr. Colquhoun came out to the waiting room—everything looked perfect, he told Robert and Ana.

There was one more frightening emergency five days later, when Kelli began bleeding internally. “It was very close and scary,” says Dr. Colquhoun. But the bleeding was stopped, and within hours Kelli was recovering in the ICU. Finally she was moved into a normal hospital room, and “from there,” Robert says, “her recovery was nothing short of miraculous.”

In the end, Kelli didn’t need the mystery Good Samaritan’s money. Before the surgery, Kelli had applied for Social Security, making her eligible for Medicare, which—to everyone’s surprise—ultimately paid for the transplants. Yet by that time, she and the mystery woman had become close friends. They even made a celebratory, post-transplant trip to Las Vegas. Says Kelli, “She’s like my soul sister or grandma.”

As Kelli’s health improves week after week, her parents’ relief is palpable. “Now I have a very, very big weight lifted off my shoulders,” says Ana, “because finally I know my daughter’s going to be all right.”

Dr. Czer says that Kelli has “a chance for a relatively normal life,” although there have been too few heart-liver transplant patients to generalize much. As for Kelli, she is just starting to plan her future and would like to go into veterinary science. “But I hate math,” she says with a laugh. So maybe making wildlife documentaries will be her thing. “Mostly,” Kelli says with her dazzling smile, “I’m glad to be here. And I take everything a day at a time.”