Brave Heart

updated 03/13/2000 at 01:00 AM EST

originally published 03/13/2000 01:00AM

To all outward appearances, Marissa Getting spent her first 10 years as a typical girl from Grundy Center, Iowa. She ran, biked and played tennis, amassed a collection of more than 70 Beanie Babies and other stuffed animals and lavished attention on her menagerie of special companions: poodles Buttons and Shadow; cockatiels Dagwood and Blondie; and a tropical fish named Magenta.

But in fact Marissa was anything but ordinary. Born with a rare and fatal defect, she was just 7 days old when she underwent a heart transplant, becoming one of the youngest people ever to have the operation. For a decade the surgery was a success; then Marissa took a turn for the worse. Ravaged by coronary artery disease—a thickening of the arteries common to transplant patients—Marissa's donor heart began to wear down. By her 11th birthday in October 1998, Marissa had grown achingly weak, her life draining slowly away. Gently, her father, Bob, a machinist, and mother, Doreen, a receptionist, broke the news: She must have a second transplant or die. "I looked at them and said, 'Don't put me on the waiting list. I want to die,' " recalls Marissa. "I'd kind of had a rough life from day one, really. I'd been longing to go to heaven."

More than a year later she's still in Grundy Center, though now the rural town and surrounding Iowa fields may seem like an earthly extension of the divine. For Marissa overcame any feelings of resignation and got down to the business of fighting for her life. Last May 25, after a harrowing eight-month wait for a donor, she received her second new heart, implanted at the Children's Hospital of Iowa in Iowa City by Dr. Douglas Behrendt, the same cardiothoracic surgeon who had performed the first transplant. Again the surgery was trouble free, though Marissa did sink into some post-op blues. "When we came home, she kept saying, 'I'm just going to get coronary artery disease again anyway,' " recalls Doreen, 35. "But when she felt better, it was, 'Oh, this is cool, I can go up the steps again.' " Now a 12-year-old sixth grader, Marissa is more irrepressibly active than ever. "I have the energy to swim, walk, run," she says. "Before, I couldn't even talk without getting out of breath. Now I can just yak, yak, yak." Adds Bob, 34: "She wears me out—but I'm glad."

In a sense the whole Getting family saga has been a test of endurance. Bob was 15 when he first set eyes on Doreen, then a 16-year-old waitress at his family's Grundy Center café. They dated for three years and married in 1983. Before long their first daughter Amber was born mildly mentally disabled. But that challenge paled compared with the one they confronted within hours of Marissa's birth on Oct. 17, 1987. She was diagnosed with hypoplastic left heart syndrome. Explains Behrendt: "The main pumping chamber, which propels the blood around the body, is not formed." Without drastic treatment, her parents were told, Marissa would die in a matter of days. The best option was a transplant, and the child was placed on medication until a donor could be found. Doreen's mother, Carolyn Stahl, recalls the sight of her tiny granddaughter wreathed in tubes. "Seeing her all hooked up like that," she says, "we just wanted to get her out of there and hold her." The donor search was widespread, and an infant heart finally became available. "We were told the medication would only work for seven days," says Bob. "Well, on the seventh day, she got the heart."

On Oct. 24, 1987, Behrendt received the walnut-size heart of a baby whose identity, according to standard practice, was not revealed to the Gettings. The operation that followed was delicate and complex. "It was not just a matter of putting the heart in," he says. To accommodate more blood flow, he needed to enlarge the aorta. But there were no complications, and Marissa went home after six weeks. From then on the Gettings made weekly trips to Iowa City for checkups, and their daughter adhered to a strict regimen of drugs that lessened the likelihood that she would reject the new heart but that also dangerously weakened her immune system. "For the first few months they kept a pretty close eye on us," says Doreen, who didn't let Marissa out of her sight for six months. "If she was running a fever or anything out of the ordinary, they had us come in."

To her parents' delighted relief, Marissa grew into an exuberantly athletic child who, in addition to riding her bike, enjoyed swimming in the municipal pool and pushing the envelope during phys ed. "The obstacle course," she says fittingly, "was my favorite part."

To be sure, there were hurdles. Starting in the mid-'90s, Marissa suffered from shingles and several other serious illnesses, signaling that her heart was not healthy. "I was calling Mom from the bed," she says of one 1994 incident. "She didn't hear me, so I got up to walk, and I didn't even get two feet when I passed out. Then I felt really scared." Doctors were afraid that she was rejecting the heart and quickly slated a second transplant. "They had her in the operating room," says Bob. When the heart arrived, Dr. Behrendt determined that it was not in good enough condition and decided that Marissa was better off with the one she had. Marissa seemed to improve, although her energy was diminished. "I noticed she really wouldn't ride her bike as much as she did before," Bob says.

Beginning in 1997 she went into a steady, if gradual, decline. By the following summer, Doreen says, Marissa was so weak "she just didn't want to do anything outside at all." The mounting fatigue left the little girl desperate. "I prayed that they'd find out why I'm so tired," Marissa recalls. In September 1998, Marissa's doctors ordered a biopsy that revealed a thickening of the coronary arteries. "The blood flow to the muscle of the heart greatly decreases," says Behrendt. "In essence, patients have many small heart attacks. They have fluid retention, shortness of breath, things people with heart failure have."

So the Gettings delicately broached the topic of a second transplant with their daughter. "I bawled," Marissa admits. Karen Dieken, a youth leader at Colfax Center Presbyterian Church, who is close to both Getting girls, recalls the day Marissa phoned to say she would decline the transplant. "She said, 'Karen, they asked me if I want a new heart, and I'm going to let somebody else have it. I decided, What's wrong with heaven?' " says Dieken, 43, who was astounded. "What do you say to that?" When Marissa reported for fifth grade, she told the same thing to her teacher, Andrea Doubet. "It just sort of gave me goose bumps," remembers Doubet, 51. "But she seemed pretty reconciled with it."

Over the next month, however, Marissa modified her stance, at least for her parents' benefit. "I could see their eyes felt sad. They're like, 'I can't lose you,' " she recalls. "So I tried to feel like, 'If they don't want to lose me, I'll act like I don't want to die.' " Pastor Larry Hoop, 49, a family friend, was touched by her dilemma. "She was weighing it out," he says, "saying heaven is a place where she wouldn't have this pain and all the fear."

In the fall of 1998, as the family awaited a donor, Marissa's deterioration showed on her face. "We could see it in her school picture," says Doreen. "She was kind of a grayish-greenish." Adds Bob: "She had a real thin, sunken-cheeks kind of thing. In the mornings when I'd come home from work, she just looked so worn out, like she had been up all night." Marissa's activities were drastically curtailed. She withdrew from her treasured phys-ed class and eventually stopped climbing stairs. Protecting her fragile heart required constant vigilance. For instance, her alarm clock was removed for fear of startling her. "The doctors said that's how a lot of people with a weak heart have a heart attack—you're sound asleep and you wake up like that," says Doreen. "It got to be kind of scary at the end."

Marissa's teacher also kept careful watch, even becoming recertified in CPR just in case. But no one outside her family gave Marissa more stalwart support than her best friend, Anne Eberline. When Marissa grew too weak to navigate the school stairs, Anne, 12, improvised. "I'm like, 'Just hop on my back,' " she recalls telling Marissa, who weighed a bit more than 50 lbs. at the time. When her stricken pal was confined indoors for recess, Anne would stay with her, and they would play games. "My favorite thing to do is laughing with Marissa," she says. "Once we get started, you can't stop us. We've never been in a fight, because it is an honest relationship." Anne was also the only schoolmate Marissa kept apprised of her medical situation. "I wasn't scared until last April," says Anne, "when some tests showed she had the heart of an 80-year-old."

The girls were in school last May 25 when, just before lunchtime, Doubet told Marissa her father was coming to pick her up. She broke into a smile, the teacher recalls, "and said, 'That means I have a heart.' " And indeed a donor had been found—a boy from Des Moines. Marissa relayed the news to Anne in the special language of best friends. "I didn't have to say anything," Marissa says. Confirms Anne: "She looked at me and I knew. I hugged her and said, 'Good luck.' " Then Marissa grabbed her book bag and jacket and left with her father. "I had tears in my eyes," Marissa says. "He asked me, 'What's wrong?' I said, 'I'm afraid I'm gonna die.' "

By 2 p.m. the family had driven Marissa the 100 miles to the hospital in Iowa City, where they waited anxiously as her six-hour surgery ground on. "They tell you no news is good news," says Bob. "But toward the end, you're going, 'No news is making me nervous.' " Finally, around midnight, he recalls, "they said everything went well." A week later, Marissa moved from intensive care to the pediatric ward, and in less than three weeks she went home for good.

Today the once-sallow Marissa is rosy-cheeked and thriving, her only setback being a winter bout with the flu. She still takes seven kinds of medication several times a day, including antirejection and blood-pressure drugs. She has gained 20 lbs. since the transplant, in part thanks to large quantities of Doreen's spaghetti, her favorite fare. But brave as she is, Marissa is human—and adolescent too—grappling with mood swings and bouts of self-pity. "I compare myself to other people," she says. "I say, 'They don't have to take medicine. I do. They don't have to go to Iowa City for checkups. I do. They have the heart they were born with. I don't.' Sometimes I'll pray, 'Just make me normal. Make everyone forget that I ever had a heart transplant.' "

Two, in fact, with the lingering threat that a third may be needed one day. "Yeah, there's that chance, but I always try to think, 'She's healthy now, and that's all that really matters,' " says Bob. For the Gettings, medical costs remain another concern, in spite of a good insurance plan. "There's your deductible, your 80-20 things," says Doreen. "We're fortunate that hospital bills have been covered so far, but it doesn't stop. It just goes on." The Grundy Center community has raised thousands of dollars over the years and offered priceless support. "Just about the time when we're thinking, 'We just can't handle any more,' " says Bob, "friends and relatives will come up and say something that will keep us going."

In October, just after her 12th birthday, Marissa received her most poignant gift: a Beanie Bear called Halo from the family of her anonymous heart donor. The bear had been the little boy's favorite, and his mother wanted Marissa to have it. Now Halo has a special place on her dresser. "I think about his parents," Marissa says. "My parents got a life, but they lost one. I wish transplants could happen without somebody having to die." Armed with that insight, Marissa is grateful to have gone through with the transplant. "Look what I'd have missed out on if I'd said no," she says of the love she receives from family and friends. Heaven, it seems, can wait for now.

Richard Jerome
Mary Green in Grundy Center

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