Eduardo Loredo leans against the wall of the cardiology clinic at Children's Mercy Hospital. Slouched like a kid at his locker, with a blue backpack slung over his left shoulder, the 14-year-old wears the look of casual indifference that matches his wardrobe: baggy Dickies' pants low on his hips, an oversized Ecko hoodie that blares its brand in black lettering across the front.
Eduardo stares past twin boys playing with magnets that cause tiny wooden cars to glide across a tabletop. He doesn't flinch when another young boy's excited laughter collapses into a rattling wheeze. He's twice as tall as the other patients here, but he blends into an otherwise Disney-tinged setting.
His face has the same gray pallor as that of the young twins. His eyes are ringed with dark shadows. He blinks slowly through a deep fatigue that resists the bright room.
The 14-year-old is dying. Slowly.
His heart beats with the assistance of that backpack. Instead of books, it's fitted with a small IV machine that pumps medicine through an orange-and-green valve that dangles, day and night, from the inner crook of his left elbow.
The plastic tubing grazes the shoulder of Eduardo's mother, Karina Loredo, as he slumps on the arm of her chair. The two seem to move as one entity, rarely breaking physical contact. When Eduardo sniffles, Loredo sniffles back. Eduardo taps her shoe with his foot; Loredo playfully stomps back. They lean into each other like a pair who share more than the typically strained bonds of a teenage boy and a single mother.
The two have grown closer over the past several months, Loredo says. This past summer, Eduardo was diagnosed with a life-threatening heart condition that kept him in bed at Children's Mercy for three months. Loredo had to explain to her son that his heart will keep him alive only until he's 17 — if he's lucky.
When they're called to the nurses' station, Eduardo shrugs off the Ecko hoodie and extends his arm for the blood-pressure cuff. The reading is low but not cause for concern. Still, in the three steps between the chair and the scale, Eduardo lets out a shallow, dry cough.
"Do you need to spit?" the nurse asks, digging into a cabinet and pulling out a yellow-plastic container.
Eduardo takes the tray limply and spits once, and then his slender frame heaves forward. The nurse lunges for the trash can, and the teenager vomits. Loredo's eyes fill with tears, and she releases one hand from a blue binder of hospital documents so she can lightly touch her son's back. For 20 seconds, the room is paralyzed with the hiccuping of Eduardo's rasps.
He pulls away from sympathy, looking down and answering in quick, single syllables when the nurse asks if he's OK. He scoops up the bag and is the first one down the hall to the exam room.
Then he waits. And waits. When he finishes a bottle of water, he taps texts into his cell phone. He studies his silver bracelet with an eye instrument. He rips open alcohol swabs and delicately touches the injection point in his arm. "We haven't forgotten about you," a nurse chirps as she passes the doorway. "The interpreters are slow!"
More than an hour later, Dr. Catherine Simon walks in with a weary-looking interpreter. The exam and consultation take less than 20 minutes. When mother and son return to the lobby, their reactions are mixed. Munching a Rice Krispie treat, Eduardo kung-fu-kicks at the elevator door, free at last. Loredo hugs the blue binder to her chest. She's confused.
Before, she says, the doctor told her that she needed a $100,000 down payment to get her son's name on a transplant waiting list for a new heart. Now, she says, the doctor has told her that she needs the full $500,000 for the operation. They're trying to find a hospital to take his case, Loredo adds, but the doctor tells her that many don't accept "international cases."
Loredo hears a code in that phrase.
"Es porque no tengo papeles," she says.
It's because she doesn't have papers —immigration papers.
Downstairs, in the pharmacy, the waiting area is crowded with parents and noisy with children. As one man elbows toward the door, he does a double take at the lanky teenager in the red Ecko sweatshirt.
"Good luck, man," he says, nodding toward Eduardo. "I saw you on TV."
Eduardo pulls the hood of his jacket over his head, embarrassed by this evidence of growing media attention. His mother hopes the exposure will save his life.
Three years ago, Loredo brought her son and daughter to Kansas City from Chihuahua, Mexico. Like her sister, Iris, who arrived in 2000, Loredo came looking for work. She found it ironing clothes at a local laundry. Together, the extended family of two women and five children settled in a small house in Kansas City, Kansas, that faced a vacant lot littered with piles of trash.
Eduardo picked up English quickly. He went to Rosedale Middle School and then Wyandotte High School and slipped seamlessly into the MySpace-checking, cell-phone-texting teenage culture. He never took to rock and hip-hop, instead listening to Mexican corridos, traditional ballads of heroes overcoming adversity or finding love.
An avid soccer player, Eduardo wasn't a kid who gave any indication of frailty, Loredo says. Because her paycheck was small, she never purchased a private health-insurance plan. The last week of June 2009, when Eduardo developed a cough, Loredo took him to Turner House Children's Clinic, on North 12th Street in KCK), which treats low-income patients. The doctor told her that Eduardo had a virus. Take him home, have him rest and give him liquids, he advised.
"Every time he ate, he would throw up," Loredo says through an interpreter.
"He felt really tired, like he'd just done some really hard work," Iris adds.
Four days later, the teenager's ankles started to swell. When Loredo took him back to Turner, the doctors were alarmed. "The clinic didn't want to tell me what it was, but they told me I had to take him to the emergency room," she says.
Loredo drove Eduardo to Children's Mercy Hospital, but the clinic had already called. Both mother and son were surprised by the urgency. The nurses treated Eduardo gingerly. Iris remembers the boy's confused expression: "Like it was a storm in a water glass."
The nurses hooked him up to an electrocardiogram machine, Loredo says. The jagged lines showed Eduardo's heart beating far too rapidly.
Doctors told the family that the 14-year-old suffered from dilated cardiomyopathy, a dangerous condition that enlarges the heart, making it difficult to pump blood effectively. "I was in disbelief," Loredo says. "I never imagined it could be something so ... delicate."
Eduardo didn't leave Children's Mercy that day — he stayed for three months. After work, Loredo would stop at home to change clothes and would sleep in the hospital each night. The weeks her son was in intensive care, she slept in a chair. Medication stabilized his heart. Doctors inserted a catheter in his arm, for the continuous IV drip that encouraged the weakened organ to continue beating.
The doctors hoped that Eduardo's heart would recover enough so Eduardo could be weaned off the medication. But when the drip was removed, his heart strained, beating rapidly to circulate blood. He couldn't keep down food. Doctors told Loredo that Eduardo would be lucky to live three years with the assistance of the medication. She says they told her that he could die in a matter of days without it.
According to a letter from Simon, Eduardo's heart function was "very poor" and "a heart transplant would be Eduardo's best chance for a normal life." But it couldn't be done at Children's Mercy, which doesn't perform that particular surgery. Sherry Gibbs, a spokeswoman for the hospital, says in a situation like this, it's not up to the family or patient to search for a willing facility. "These are typically physician-to-physician conversations," she says.
Two months into Eduardo's hospital stay, Loredo says, Simon told her that the nearest facility equipped to operate — Children's Hospital in St. Louis — had agreed to put Eduardo on its waiting list and cover the cost of the operation. The hospital's social worker told her not to worry about follow-up treatment — Children's Mercy would pay for follow-up care and medication until Eduardo turned 18.
A few days later, Loredo says, the hospital's story changed. St. Louis wasn't willing to perform the operation. Children's Mercy would not pay for the pricey aftercare. In fact, Heidi Suppelsa, a spokeswoman for the St. Louis hospital, tells The Pitch that her facility has no records pertaining to Eduardo and that he has never been evaluated by the hospital or placed on any waiting list. (Gibbs says she can't comment on what might have been said by staff during Eduardo's hospital stay.)
A few weeks later, on October 14, Children's Mercy discharged Eduardo, telling Loredo that he was better off resting in familiar surroundings. Gibbs says the hospital continued contacting dozens of facilities, nationally and internationally, about Eduardo's condition. But on October 20, Loredo was given a letter from Eduardo's doctor that made her only more anxious.
"Due to his lack of insurance, he is not able to be listed for a heart transplant," the letter read. "The cost of a heart transplant would be at least $500,000."
On a cold Thursday afternoon, Eduardo disappears down the unlit hallway of his family's home. He's not interested in speaking to visitors. He's also not willing to let anyone peek into the room that he shares with his cousin.
Since summer, he hasn't been able to play soccer. Some days, Iris says, her nephew doesn't leave his room. "Yesterday we were talking about getting him new clothes and boots," she says. "He said, 'For what?'"
The two sisters, perched next to each other on the couch, share the same thick hair and dark eyes. Like Loredo, Iris has a son whose life hinges on expensive medical treatment.
Now 2 years old, Iris' son, Christopher, was born with cerebral palsy, a brain disorder that disrupts cognitive function and motor skills. "He spent his first year in the hospital, at Children's Mercy," she says.
Special chairs with straps and cuffs, for securing Christopher while he sits or eats, crowd the Loredos' living area. His daily regimen includes six expensive medications. Physical therapists visit the house regularly, and a home-care nurse watches him daily from noon until 10 p.m. "He can't be left alone, even for a second," Iris says.
Iris is convinced that her son would have died without the hospital and the nurses and the expensive pills. Like Loredo, she can't afford a private insurance policy. Like Loredo, she's an undocumented immigrant. But because Christopher was born in the United States, he qualifies for Medicaid. "It's all covered by insurance," she says. "Thank God."
Eduardo is cut off from that option — in the complex transplant system, that could be crucial.
For the past four months, Children's Mercy has covered Eduardo's bills. Gibbs says the teenager's medication alone costs as much as $10,000 every three weeks. Missouri state law requires that any resident, regardless of immigration status, receive emergency care and retain treatment until he or she is stabilized. Except in life-threatening situations, undocumented immigrants are excluded from state and federal health coverage for low-income families. Right now, Eduardo survives on the charity of Children's Mercy.
Ray Gabel, a spokesman for the Midwest Transplant Network, was in Eduardo's position 19 years ago. When he was 24 years old, Gabel contracted a virus, Epstein-Barr, that attacked his heart. He understands Loredo's anxiety at each passing day and the urgency of being on the waiting list for an organ. "Another couple of months, and I wouldn't be around," Gabel says. Instead, he's going on 20 years with a new heart and a normal life.
"There's a 90-percent success rate," he says of the transplant. "This is not a Band-Aid for this kid. Realistically, there's no reason he couldn't go on for a very long time, have kids, have a normal life."
But Eduardo's odds are particularly slim. First, hearts are hard to come by. Less than 2 percent of deaths spare an undamaged heart for donation, Gabel says. "And generally, a donor has to be within 30 to 40 pounds of the patient's weight, so it will fit in the cavity and not overwork or underwork," he adds. "Children, in general, have less of a pool to pull from than an average adult."
Geography works against Eduardo as well. "With a heart, we only have four hours once it's removed from the donor," Gabel explains. Even to get to St. Louis in time, Gabel says, the teen would need a private, charter flight. Living in Kansas City, Eduardo would have the best chance if he were placed on a waiting list at a hospital — or at more than one facility — in the Midwest. Currently, there are 172 people waiting for a heart in Region 8, which includes Missouri and Kansas.
Eduardo isn't one of them. And his biggest hurdle in getting his name on the list could be money.
Most hospitals, Gabel says, provide care to those who can't pay, and many don't take immigration status into consideration. Suppelsa says that's the case at St. Louis Children's as well. "But even before these economic times, hospitals could typically take one to three cases a year," Gabel says. "The big Catch-22 is, can the family and support system pay for the medication afterwards?"
The hospital costs stem from just a few days' care. The follow-up regimen and the medications that ensure the organ's assimilation into a new body continue for the rest of the patient's life. Any hospital, prior to putting a patient on its waiting list, must consider whether the family has money to protect the new organ.
In Eduardo's case, the family can't make that promise. Medicaid won't, either, because the teenager is undocumented. "If five other families do have the aftercare, they're not going to give it to the family that does not have the aftercare," Gabel says.
That equation would be different in Mexico. Daniel Aguado-Ornelas, director of legal affairs for the Mexican Consulate in Kansas City, has spent months researching options for Eduardo in his home country. "There are three hospitals that can do this in Mexico," Aguado-Ornelas says. "Typically, between 25 and 50 heart transplants are performed each year."
In Mexico, Aguado-Ornelas explains, Eduardo's care would be covered by government insurance. But there's no guarantee that he could even get on the list. "There is a reduced number [of organs], and they have to choose the best patient," he says. "If they cannot prove that he will survive, perhaps the heart won't go to him. At this moment, we're waiting for Mexico to tell us."
Right now, returning to Mexico is a gamble that Loredo isn't willing to take. She has no family in Chihuahua. She has no job awaiting her there and no assurance that Eduardo would receive a heart in Mexico.
Iris is frustrated that her sister might be prodded back across the border and into greater uncertainty. As the two women talk, the home-care nurse moves between the kitchen and Christopher's bedside. Eduardo spends the afternoon locked silently in his room — no music or movies or cell-phone chatter. Iris doesn't try to conceal her outrage that one child in this house could die while another could continue to live based on which side of the border they were born.
"They spend all these millions on war — why can't they just save one life?" she asks of the U.S. government. "Yes, we're here. But it was out of necessity. If I had what I have here in my country, I never would have come. It wasn't just to be here. It was to survive."
Skateboarders ricochet down the stairs in front of the Regnier Center at Johnson County Community College, the clattering of the wheels masking the music leaking from the dimly illuminated building.
The adjacent art museum is closed on this frigid Sunday night, but Spanish techno echoes down the hallway. Students in black shirts marked LUNA — Latinos United Now and Always — linger at a table at the entrance of a large conference hall, ripping tickets for the "Give the Gift of Life" fundraiser.
Outside, Will Suarez presses a cell phone to his ear. A native of Peru, Suarez now lives in Kansas with his family and attends JCCC. He's the president of LUNA and aspires to a career in public administration. Already, he speaks with the poise of a campaigning politician, with the reassuring demeanor of a social worker.
He has become both for the Loredo family.
When another JCCC student told him about Eduardo, he went to visit the teenager in the hospital. Over the past year, he has made it LUNA's mission to highlight injustices in the immigration system. When he met Eduardo, though, he made Eduardo's case a personal commitment. He has appealed to local organizations and has contacted transplant experts. He has acted as the Loredos' spokesman and chief fundraiser. Loredo calls him William and treats him like a second son, asking him about school, rearranging his coat collar.
This JCCC event is the highest-profile event so far. In early December, a dance at the club La Salsa raised $2,000. On a mid-December morning, Suarez got a call from an anonymous woman who chipped in another $1,000. Across the city, Hispanic businesses and restaurants are placing donation containers on their counters and tables. By the end of the night, proceeds from the art auction and ticket sales from JCCC's night will add another $1,400 to the bank account.
Loredo family members, dressed in their banquet best, stream through the door. Eduardo saunters in wearing a puffy black jacket. His eyes dart away from the sympathetic stares. He stays insulated from the constant looks and the awkward conversations about his health by sticking close to his friends and cousins. He and his small crew camp near the door, moving in a pack even to grab a soda.
Next to the young men, Julie Pierce hugs the back wall, too. Featured in Michael Moore's movie Sicko, the Mission resident lost her husband to kidney cancer when private insurance denied him a bone-marrow transplant. She glances at Loredo. "I can't imagine what she's going through," Pierce says. "I mean, it's a child."
When the DJ takes a break, Pierce joins Suarez onstage. She reads a statement from Healthcare-Now, a Washington, D.C., organization that advocates for a single-payer, government-sponsored insurance system. In December, HCN took Eduardo's campaign nationwide. Along with another national group — the Poor People's Economic Human Rights Campaign — it organized a petition that gathered nearly 2,000 signatures in a matter of weeks. "No social determinant, including citizenship or wealth, should affect this decision, but they do not flinch to ask a 14-year-old for half a million dollars to get on a wait list," Pierce reads from the HCN statement.
Katie Robbins, an organizer for HCN, says her group wants to see a system that provides Medicare-like coverage to all residents, not just citizens. According to Healthcare-Now, a single-payer system that includes undocumented residents would save $400 billion per year, compared with the estimated $2.5 trillion in total U.S. health-care spending — public and private — in 2009.
"Eduardo's situation is symbolic of the many people who are left out of our health-care system, even as health-care reform is supposedly happening," Robbins says.
"But it's been a very fierce national climate on this issue, and it's been very discouraging that even the president has supported it [the exclusion of undocumented persons] to a certain extent, reminding us again and again that we will not provide health care to the undocumented," she adds.
On the stage at JCCC, Monique Gabrielle Maes-Salazar, a member of the Latino Writers Collective, tries to fire up the crowd.
"This is a blatant crime against humanity," she shouts. "The only difference between what's going on here and murder is that we are watching him die, slowly, every day."
Eduardo doesn't register the impassioned rant. His attention is trained on a teenage girl in a purple sweater. They're smiling coyly, comparing charms on their necklaces. She's got a round medallion that looks faintly Aztec. He's got a small gold Playboy bunny.
Several teenagers huddle around a woman sketching caricatures on a small easel. As Eduardo sits for a sketch, with two girls drawn on either side, his friends circle around. He licks his thumb and playfully smoothes his eyebrows, clowning for his audience. The girls giggle. When the artist is finished, Eduardo cranes his neck to examine his grinning portrait — his entire entourage breaks into laughter.
The two girls sandwich Eduardo, moving in close to inspect their faces on either side of the drawing. One of them asks if she can take a picture. There's no question who will keep the memento.
The sound of Eduardo's sniffles break the silence in the empty house as Joan Postlewait, a teacher at Wyandotte High School, spreads the freshman's schoolbooks across the dining table. This Friday tutoring session has just begun, but the 14-year-old isn't paying attention. He keeps his head down, anxiously whittling the sides of a pencil, peeling off the layers of yellow paint with a dull knife. As his hand jerks forward, the plastic IV in his left arm taps softly against the wooden table.
"You making something new with that pencil?" Postlewait asks, trying to break Eduardo's focus.
For an hour every weekday afternoon, Postlewait tries to corral Eduardo's concentration, bringing assignments from his reading-enhancement, math and economics classes. She volunteered because Eduardo used to be her ESL student. She describes his skills as "advanced."
Today, his fatigue is apparent. He yawns and slouches. Just a few moments into a spelling section, Eduardo's blue backpack starts to beep. He doesn't wait for Postlewait's permission before getting up. "Mama!" he calls out as he disappears down the hallway. "The medicine ran out!"
When he returns, Eduardo breezes through an English workbook passage about parents wanting to ban offensive content on MTV, confidently stringing together the words with a casual cadence. They move on to another reading lesson that focuses on American government. "What is the Bill of Rights?" she asks. "Who does it protect?" Eduardo shrugs. Postlewait points back at the page. "Find the answers," she prods. Eduardo ducks his head, his eyes combing the paragraph.
The afternoon slips quickly toward 2 p.m. when Postlewait needs to return to her classroom. She hands Eduardo a piece of notebook paper, a report he wrote about the African National Congress and Nelson Mandela. "She gave you an A," Postlewait says of another teacher's grade. Eduardo started the year nearly three months late, but Postlewait doesn't discount the chance that Eduardo could still pass the required number of courses and finish his freshman year on time.
"Seriously, I think I'm going to come and visit you on Christmas," Postlewait says, her eyes betraying the joke.
"For real?" Eduardo complains, speaking through the pencil stuck between his teeth.
"Está bien, Eduardo," Loredo says from the couch, her permissive, playful attitude evaporating when it comes to schoolwork.
"OK, well, should I come before Christmas or after Christmas?" Postlewait tries again. "When should I come?"
"In February," Eduardo says, his sarcastic, lopsided smile sliding across his face.
Loredo looks on, holding her cell phone, as always, waiting for it to ring.