Two-month-old Juniper Gelrod had been waiting for a heart for a month and three days when Dr. Max Mitchell opened up her chest and gave her a mechanical one—a 200-pound machine called a Berlin Heart.Weighing about as much as a bowling ball, Juniper was the smallest person to ever undergo this procedure at the Children's Hospital Colorado. She had a 50 percent chance of living through it. Without it, she'd have died in two weeks.
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Juniper survived. Tubes ran through her fist-sized heart, exited through her belly, and pumped blood through her tiny body.And she and her family waited for a real heart.Every day, an average of 18 people die waiting for a lifesaving organ transplant, according to the US Department of Health and Human Services. There are only about half as many hearts for the over 4,000 patients who await them. With Left Ventricular Assist Devices (LVADs), like the Berlin Heart for Juniper and the Thoratec HeartMate II for adults, doctors keep patients alive who, in the past, would have died waiting for a donor. Since LVAD approval by the Food and Drug Administration in 2011 and 2010, respectively, waiting lists have gotten longer. And as the pool of potential donors remains stagnant, these lists are backing up.Heart pumps play a big role in waiting list position. The United Network for Organ Sharing (UNOS) always places patients in hospitals with Berlin Hearts at the top of the transplant list. It's called A-1 status. For outpatients with battery-operated portable pumps like the Thoratec Heartmate II, however, A-1 status comes for only 30 days at a doctor's discretion. If the patient doesn't get a heart in that time, he or she goes back to the middle of the list.
With limited time and an organ supply that doesn't match the transplant demand, doctors are searching for ways to predict the best times to find hearts for their patients. They tend to upgrade the urgency of their patients' status during the winter holidays—not out of sentiment, but because there is a common belief that more organs become available.Christmas is coming up, let's upgrade a couple of these people
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"I don't know if it's folklore or what have you, but the thought around the holidays is that there are more accidents, or suicides, or something of the sort, to the point where you actually have more donors," said transplant cardiologist Dr. Parag Patel.Based on their own experience, Dr. Patel and his colleagues at the University of Texas Southwestern Medical Center, believed that upgrading LVAD patients to A-1 status over the holidays would more successfully get patients hearts."Christmas is coming up, let's upgrade a couple of these people," he recalled.But instead of relying on a hunch that year, they decided to do some research to test the theory that holidays mean more hearts.
The doctors used the UNOS database to track the number of transplants per day nationally over the year. They broke the year into non-holidays and holidays—Fourth of July, Labor Day, Thanksgiving and Christmas/New Years.The results, published this August in The Journal of Clinical and Translational Research, showed that there were actually more transplants around the Fourth of July and fewer during Christmas and New Years. This surprised the doctors because it contradicted what they thought they knew about suicide rates being higher in the winter than summer. According to the CDC, however, suicide rates are lowest in December.To explain their data, Dr. Patel and his colleagues looked at donor characteristics. Donors on the Fourth of July were younger and died of non-natural deaths like gun shot wounds, car accidents or drowning. There wasn't anything particularly different about donors over winter holidays.
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Maybe, said Dr. Patel, they've been wrong all along—there just aren't more organs available over Christmas. Or maybe there are more deaths and short-staffed organ procurement agencies don't identify every potential donor. Maybe grieving donor families are less likely to donate over the holidays. Maybe it's a problem with the hospital—perhaps it's short-staffed and can't perform transplants. Maybe doctors are just hopeful."Right now I've got a guy who's waiting. He's been waiting [in the hospital] for two months…He came in today and said, 'hopefully I'll get a gift from Santa,' and I said, 'yeah, I hope Santa comes down here too.'"Generally, however, Dr. Patel said it doesn't matter when a doctor upgrades his patients to A-1 status because the transplant rates are going to be about the same. Yet, after finding seasonal differences showing more transplants in the warmer months, he added: "if you're going to hedge your bets a little bit, it may be beneficial for you to upgrade these patients around the summer or spring time."Tom Mone, the CEO of One Legacy, America's largest organ procurement agency, says it's not so simple: "Just as soon as you think you can predict the ebbs and flows, you realize you're wrong."He says that although people may be more generous over the holidays, they're also not likely to be doing things—like working on a roof—that may lead to accidents and ultimately a donated organ. Moreover, less than 1 percent of people who die actually qualify to donate their organs, as donation depends on donor history, blood type, size, and health.Maybe they've been wrong all along—there just aren't more organs available over Christmas
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Juniper was born on February 12, 2014. Within two weeks she had been diagnosed with pediatric dilated cardiomyopathy—in her case, a genetic condition in which her heart developed abnormally and pumped at a sixth of the normal rate."The first week was terrible," said Joni Shrantz, Juniper's mother. She and Juniper's father, Cole Gelrod, were worried about their daughter's quality of life. "She was so young, and we're not the type of people that believe in 'save at all costs.'" When they learned that kids in Juniper's position could grow up to live normal lives, they decided to get the transplant.
Juniper Gelrod received a heart transplant after waiting six months in the hospital on a Berlin Heart. Image credit: Joni Schrantz"We didn't want to have to look back and always wonder what would have been," said Schrantz.Still, she feels guilty thinking about the family on the other side of Juniper's heart, who lost a child with roughly the same size heart. "It's a real family that you haven't met, and you imagine what they're going through," she said. "You'll be forever indebted to them because it's their choice."With any transplant, doctors, donors, and recipients must make life or death decisions in short amounts of time.A registered donor, by law, must donate his or her organs after death. But with unregistered donors, the decision rests on the deceased's family—and with around 40 hours before the organs no longer work, the decision doesn't wait for grief. Still, Mone says about 75 percent of families of the deceased donate."It's a true gift for anyone to do that when a loved one has just died," said Dr. Patel.After six months at the top of the waiting list in the hospital with a mechanical heart 20 times her size, Juniper got a real heart. The operation took place on September 17—just in time for the holidays.Correction: An earlier version of this story referred to Juniper's heart machine as a Lateral Ventricular Assist Device; the correct term is Left Ventricular Assist Device.