A video of Walt Disney's Aladdin played on the television. But Jamie mainly watched the kids, smiling at the fun in a devilish way. There was a sky-blue cake with white ruffles of icing, and everyone sang "Happy Birthday." With help Jamie blew out the candles. He closed his eyes and made a wish. "Oh I know what you wished for," Millie Solla de Villa, a Human Rights Advocacy Committee volunteer, exclaimed, perhaps a bit too cheerily. Jamie's birthday wish was probably that he would walk again. Instead he mostly got stuffed, plush bears.
Jamie Maitre and his mother long ago should have returned to their home in Saint Lucia. He should be riding his bike with neighborhood friends on the streets of the capital city of Castries, or climbing his grandmother's trees in the countryside during weekend jaunts with his parents. If all had gone as expected, the only reminder of Jamie's trip to South Florida would be framed press clippings hanging in some pastel-color hallway wall at Miami Children's Hospital, stories chronicling the happy ending for a poor immigrant boy with brain cancer whose life was saved by the sophistication and benevolence of U.S. medicine.
In 1998 a neurosurgeon at Miami Children's removed an orange-size malignant tumor from Jamie's brain. But then the young boy suffered a rare reaction to the postoperative treatments.
Now Jamie remains in South Florida two years after his family scraped together their life savings for the trip to the United States and the operation that would save his life. He is paralyzed from the neck down and spends most of his days in bed. He doesn't go to school and doesn't receive any medical help. His parents have been offered scant assistance in dealing with, and caring for, a child who will be totally dependent on them for the rest of his life.
Jamie and his mother recently moved across the state to Naples to live with relatives. Before that they had been living in Miami on the kindness of others, including Solla de Villa, a newfound friend. Naomi Maitre says there is no future for her son back in Saint Lucia. "People like Jamie are hidden away from society," she explains. "That's not what I want for my son." But the struggle to get the boy U.S. citizenship may make for an unpromising future here as well. Good intentions and medical charity were not enough to produce the miracle Jamie and his mother came seeking. Instead they have exhausted the limits of the system that once helped them and have been left to fend for themselves.
For Maitre it has been a lesson in the limits of philanthropy and the unpredictability of miracles.
Jamie Maitre was born in September 1994, in Castries. Saint Lucia, part of the Lesser Antilles, is north of Venezuela, between Martinique and Saint Vincent. It is a resort hotspot where vacationers are carefully shielded from the relative poverty in which a quarter of the nation's population lives. Most of Saint Lucia's 150,000 inhabitants live along the coast, while farm families, mostly banana growers, live in the island's interior.
Choiseul, the small farming village where Naomi Maitre was born and raised, offered her few ways to make a living. "If you need to work, you have to work in the city, or else you work in the farms, or if you're a woman, in the garment factories," Maitre explains. "And I wasn't about to work in no garment factory." So Maitre headed for Castries, a harbor town where giant cruise ships dock and dump tourists onto the 27-mile-long island.
In the capital city Maitre worked at a preschool and studied to become a teacher. She met Frederick Maitre, a construction worker, and the couple married in 1994. Shortly thereafter Jamie came along. "The boy was growing up good," Naomi Maitre says. But trouble came in July 1998, when he started throwing up regularly. "He would vomit every morning," Maitre recalls. "Every time he ate, he would vomit. If he drank water, he would vomit. I took Jamie to every doctor on the island, and no one could tell me anything." Jamie suffered from severe headaches as well, she recounts.
In September 1998 the 28-year-old mother took her only child back to his pediatrician, Dr. Jacqueline Bird-Compton, and asked if the doctor would conduct a CAT scan of Jamie's head. "That type of technology had just come to Saint Lucia," Maitre says. The pediatrician viewed the test results with uncertainty, however. "The doctor said it looked like Jamie had a tumor, although she wasn't sure," notes Maitre.
Medical care in Saint Lucia is rudimentary. There often are shortages of basic medicines, supplies, and accommodations for patients. There are only 2 general hospitals and 34 health centers on the island, and just 5 doctors for every 10,000 people. If indeed Jamie had a tumor, Maitre says, she and her son would have to leave the country to seek surgery. The tiny nation hardly offered the level of medical sophistication needed to remove a brain tumor. In fact, there was not a single neurosurgeon on the island. Maitre confided her problem to her sister, Sabine Matthews, who lives in Naples. Matthews in turn mentioned the boy's plight to a family friend, Brenda Owusu.
Owusu is a registered nurse and the wife of a pastor from Golden Gate Seventh Day Adventist Church, the congregation to which Matthews belongs. Owusu already knew Jamie; she had visited the Maitres in Saint Lucia in the summer of 1996, when Jamie was almost two years old. "He would wake up in the middle of the night to pee," Owusu recalls. "That's how well he was potty trained. Jamie is a very bright boy."
When she learned of the family's predicament, Owusu urged Maitre to bring her son to the U.S. for medical care. "I told her: “You need to get over here right away,'" Owusu recounts.
Owusu's family doctor from Naples recommended that Maitre try to get her son into Miami Children's Hospital, a reputable facility founded by philanthropists in the Thirties. Owusu contacted Dr. Glenn Morrison, a neurosurgeon at the hospital, and explained the situation to his secretary. Dr. Morrison faxed his business card to Owusu and agreed to see Jamie. The Ministry of Health in Saint Lucia wrote a letter to the U. S. Embassy in Barbados recommending that mother and child travel to the United States for a consultation. The embassy issued tourist visas to Naomi and Jamie. Maitre paid for their airline tickets with the little money the family had been able to save.
On September 29, 1998, a day after Jamie's fourth birthday, mother and child arrived in Miami. They never imagined they'd still be here more than two years later.
Just ten days after the first CAT scan was taken in Saint Lucia, Naomi and Jamie met with Dr. Morrison. The neurosurgeon studied the scan and immediately ordered an MRI of Jamie's head. "He said the tumor was very large," Maitre remembers. Not only was it large but Dr. Morrison discovered it was cancerous as well. Jamie had a type of cancer called medulloblastoma. The tumor was pressing on Jamie's brain stem, obstructing the flow of spinal fluid. The boy needed an operation immediately, Dr. Morrison told Maitre. He instructed her to take her child to Miami Children's the following morning. "He was wobbling and he couldn't see," says Maria Penate, a registered nurse who works for Dr. Morrison. If Morrison didn't operate right away, adds Penate, Jamie could have died within weeks.
The doctor's orders, according to Maitre, weren't sufficient when it came time for Jamie to be admitted to the hospital. Since Maitre had no insurance or government aid, and because she and her son were foreigners, an admissions clerk asked for a $10,000 down payment before a bed could be reserved. It was money Maitre did not have. Feeling hopeless, she was about to leave Miami Children's when Owusu got hold of Dr. Morrison and informed him of the situation. "I don't know what he said to those people, but suddenly there was a room for Jamie," Maitre says.
The cost of care, not including hospital stays and living arrangements, would come to about $50,000 -- an astronomical amount for a patient without health insurance. Although Maitre and Dr. Morrison had agreed on a payment plan for the surgery, the neurosurgeon canceled the bill after it became evident Maitre and her son needed all the help they could get.
At 9:00 a.m. on October 1, Jamie underwent surgery. He came out of the operating room, awake, at 1:30 p.m.. "His head was all bandaged up, and he said, “I want my mommy,'" Maitre recalls. "In the recovery room he said, “Mommy, I'm hungry.'" Jamie then was transferred to the intensive-care unit, where he stayed for about a week. Next he went to the Free South unit and remained there for two weeks. While at Free South, Maitre says Dr. Morrison introduced her to Dr. Enrique Escalon, the attending physician in a five-member team, including one doctor from Mount Sinai Medical Center who would see Jamie through radiation therapy and chemo, the common, aggressive method used to battle the recurrence of cancer. Jamie began his treatment just a few days after he was discharged from the hospital.
The boy's brain tumor had been completely removed. Approximately nine to twelve months of chemotherapy and two months of radiation therapy were expected to reduce the chances of a recurrence. Jamie had an 80 percent chance of recovering fully from the cancer.
The hospital put the mother and son up in a nearby apartment they would share with about five other families. Jamie and his mom would stay there for the duration of his treatments.
Dr. Lauri Blach from Mount Sinai began whole-brain and spinal radiotherapy on Jamie. During the first half of an eight-week treatment, which also included a booster of radiation to the tumor site, the waves penetrated the boy every day. And at Miami Children's Hospital he received chemo medication called vincristine in the form of shots once a week for eight weeks. Jamie had all the energy in the world, Maitre says, even though doctors warned he would tire quickly. "I would tell him: “Jamie, it's time to take a nap now,'" Maitre says. "He would say, “Mommy, no, it's not darkness.'"
During a six-week hiatus from the drugs, the Make-A-Wish Foundation called Jamie. A child-life specialist from the hospital had referred Jamie to the charity group. The organization, which grants the wishes of children with life-threatening illnesses, sent Jamie and his parents on an all-expenses paid weeklong trip to five Magic Kingdom theme parks. (Frederick Maitre, Jamie's father, happened to be in town from Saint Lucia for the holidays.) A limousine transported the family to Miami International Airport, and a tour guide holding a sign reading, "Jamie" welcomed them in Orlando. They stayed in a two-story house at the Give Kids the World Village. Jamie played, laughed, talked, and ran to most of the attractions. He had the time of his life.
On January 21, 1999, Jamie began the second phase of recovery, a chemotherapy regimen that was to last a total of nine to twelve months. Every 42 days Jamie received three oral doses of the chemo drug CCNU, plus an intravenous bag containing cisplatin that ran for six hours. He also received a weekly shot of vincristine.
In mid-April Jamie's voice began changing. According to Maitre, Dr. Ziad Khatib diagnosed him with a cold and prescribed Robitussin. Then, a week after taking a third dose of the three chemotheraputic agents, paralysis began to set in on Jaime's left side. He began limping and couldn't stand without support. Jamie was admitted into the children's hospital's intensive-care unit for five days. Doctors monitored his heart, lungs, and blood pressure. In June he began to lose mobility on his right side (he also received his last chemo treatment that month). "He was only able to hold his head up," Maitre says. His speech had worsened as well. "I wasn't able to understand anything he was saying." By mid-September Jamie's head would slump forward; Maitre had to prop him up with pillows for support. The boy had become a quadriplegic.
Jamie's doctors were baffled and at first could not agree on what had happened to him. If anything the oncologists expected long-term side effects from the cancer treatment, such as learning disabilities, stymied growth, a weakened heart and lungs, and, though uncommon, perhaps partial paralysis. But for a postoperative patient to lapse into complete paralysis in such a short time was unheard of. Physicians treating Jamie were at a loss to explain what had happened.
During Jamie's five-day stay in the intensive-care unit, an intern had suggested to Maitre that her son might have suffered a mild stroke. Dr. Morrison, the neurosurgeon, explained to the distraught mother that perhaps swelling in the brain could have caused the paralysis. Finally Dr. Khatib told Maitre that Jamie's paralysis was caused by radiation necrosis. The nerve cells in Jamie's brain stem, as well as in the upper portion of his spinal cord, had died. Waves of radiation had killed them along with any remaining cancer cells. The condition, Dr. Khatib told Maitre, was irreversible. "I felt my world just crumble," Maitre confesses. "That's my one and only child. I was lifeless; I couldn't even cry."
With her child in a small stroller, Maitre took two public buses and the Metrorail from Miami Children's Hospital to Mount Sinai Medical Center, where Dr. Lauri Blach had given Jamie radiation. "I asked Dr. Blach what happened," Maitre says. According to Maitre, Dr. Blach said the radiation could not have possibly caused the paralysis, because they took great pains in ensuring the precise amount was given. (Blach could not be reached for comment.)
Unable to answer the mother's questions, oncologists from Miami Children's and Mount Sinai agreed to send Jamie's medical files to Saint Jude Research Hospital, a leading pediatric cancer research center in Memphis, Tennessee. Dr. Larry Kun, chairman of the radiation oncology department at Saint Jude, reviewed the case in October 1999. "It was unclear what was happening," Kun says. According to Kun, Jamie's paralysis could have occurred because he happened to be part of a very small percentage of the population unusually sensitive to radiation therapy. The other explanation -- a higher than normal dosage of radiation administered to treat a progressive tumor had caused the boy's condition -- was unlikely because there was no tumor regrowth. "I've seen some bizarre things throughout my career, but this is pretty unusual. It's extremely rare," he comments.
Oncologists at Miami Children's Hospital adopted Kun's first theory. "We think certain people are genetically incapable of handling radiation," Dr. Khatib asserts. "Jamie is one of those people."
But Maitre didn't buy it. "It just doesn't make sense to me," she says.
Oncologists continued to conduct MRIs on the boy every three months and treated him with medications that would reduce swelling in the brain and open his blood vessels to improve circulation. But the drugs did not improve Jamie's condition. Dr. Khatib claims the doctors also looked into experimental treatments such as hyperbaric oxygen therapy, whereby pressurized oxygen stimulates the growth of new blood vessels, replacing those that have been killed by radiation and allowing the body to heal. But Maitre says it was only after she had inquired about the cutting-edge oxygen treatment that Jamie's doctors began to research it. Dr. Khatib contacted the hyperbaric oxygen specialist at Jackson Memorial Hospital, who in turn informed him that the therapy had not worked on radiation necrosis victims there. Plus there were many risks involved. In the end Dr. Khatib told Maitre it seemed unlikely that Jamie would benefit. It also was very expensive. "It was very discouraging," Maitre admits.
Jamie's last MRI was taken on July 2000. His brain was completely free of cancerous cells. That was the last time he saw a doctor from Miami Children's Hospital. Things would only continue to get worse for Maitre and her son. Instead of feeling sure that treatment possibilities for Jamie had been exhausted, Maitre was confused and concerned about what happened and where she could turn for help. "This poor woman has seen more doors close on her and her son than you can imagine," comments nurse Maria Penate, who works for Dr. Morrison, the neurosurgeon.
Thinking back, Naomi Maitre says she didn't understand the risks of radiation and chemo. She had no idea her son faced possible paralysis.
Yet she most certainly would not have refused the operation because of postoperative risks. At best she would have at least known what to look out for, perhaps been better prepared for what lay ahead.
Maitre claims none of the five physicians administering her son's radiation and chemo explained this would be a risk, however minimal. "It sounds like this mother never got the whole picture," offers a local expert in the medical field who asked not to be identified. "Sometimes if a patient is not sophisticated, they get snippets of information here and there, but they're not told everything by one person."
Unsatisfied with the medical opinions she had been given, Maitre did some research of her own. She called Johns Hopkins University and the American Brain Tumor Association and requested reading material on cancer therapies and side effects. Dr. Khatib had explained to her that radiation necrosis was an allergic reaction to radiation therapy. "But I had read nothing about allergies," Maitre declares angrily. "Nobody has ever been allergic to radiation."
By June 1999 Jamie was three months short of completing his chemotherapy. His last doctor's visit was in July 2000. And in September a hospital social worker informed Maitre that she and Jamie had to move out of the apartment they had been staying in rent-free. No one from Miami Children's Hospital offered them any other options. "They never took it upon themselves to care for Jamie up until the very end," Maitre charges. But there was no end in sight.
Miami Children's Hospital had no legal obligation to admit Jamie for surgery and did so purely as a humanitarian act. Such acts of goodwill at hospitals that aren't publicly funded certainly have their limits. Especially, as in Jamie's case, where medical care is a long-term commitment.
Unlike Jackson Memorial Hospital, Miami Children's does not receive county tax dollars for indigent care. Thanks to the Public Health Trust, Jackson is able to provide medical care to uninsured people, including undocumented immigrants. At Miami Children's charity comes straight out of the hospital's operating budget and usually goes to local patients facing extraordinary circumstances. In 1999 Miami Children's spent $4.5 million on charity care. Some of the money covered the costs of international patients who had defaulted on hospital payments.
Miami Children's has a very informal yet exclusive international program. It usually admits wealthy patients from other countries on a case-by-case basis and only after having worked out financial arrangements with families, international insurance providers, and foreign government agencies. Sometimes, as medical complications arise and costs soar, explains José Perdomo, director of the hospital's international program, the money flow stops, and the hospital eats the costs.
Would the working-class Maitre family have qualified to participate in Miami Children's international program? It seems unlikely. Saint Lucia is a poor nation, and the family's only method of payment was their hard-earned savings. Jamie is not the son of "international dignitaries" or "heads of state," the clients described on an international patient services brochure who "choose" Miami Children's Hospital when it comes to their children's health care. In fact though they had agreed on a payment plan after the surgery (Maitre would pay at least half of the $20,000 operation), Dr. Morrison stopped charging the family after Maitre paid him $600. Already the trip from Saint Lucia had cost the Maitres $2300. "My bank account went empty," Maitre says with resignation. The hospital is still billing Maitre for services, though Perdomo asserts that's just a formality, and they don't expect her to pay. The total cost for Jamie's care was somewhere around $50,000, not including hospital stays.
Just as Maitre began to lose hope that her son would not get the care he needed, this past summer she met Millie Solla de Villa at a Walgreen's drugstore. "I noticed the stroller Jamie was in was kind of small," Solla de Villa recalls. "I felt like I had to talk to this lady. The feeling was stronger than me." The women conversed about the child's condition. "I gave her my card and told her to call me if she needed anything." Solla de Villa, a Human Rights Advocacy Committee volunteer, has been helping Maitre and her son ever since, with food, diapers, and public relations. But unless Jamie and his mother establish roots in Miami-Dade County or elsewhere in the United States, there's not much a part-time activist can do, says Miriam Hermatz, a pro bono attorney at Florida Legal Services who specializes in health care law.
Solla de Villa got Haitian activist George Williams involved and even called the consul general of Saint Lucia in Miami, Kent Hippolyte. He offered to find housing for Maitre and her son when Miami Children's told the family they had to vacate the hospital-owned apartments they had been staying in for about a year. Solla de Villa told hospital social worker Mercedes Castro to put it in writing. Although Castro did not, Solla de Villa managed to extend the family's stay at the apartments for a few more weeks. To the hospital's relief, Maitre and her son moved to Naples.
Maitre and Jamie are now living on the Gulf Coast with family. Jamie isn't seeing a doctor, and he's not enrolled in school, though Maitre says that thanks to Brenda Owusu, he will likely begin in January at a school that offers physical therapy.
Though long-term care may have been out of the question at Miami Children's Hospital, perhaps better-informed hospital social workers could have linked Jamie and his mother to whatever services they were eligible for. But they didn't. After Jamie lost all mobility, Maitre says she received no information on how to access immigrant services, indigent medical care, or even public schooling for her son. (Under federal law all children are entitled to a public education, no matter what their legal status or disability.)
Oncologists did not refer Jamie for rehabilitation services such as physical and speech therapy because, according to them, such treatment would not improve his condition. Though they were not required to do so, perhaps doctors or social workers at Miami Children's could have referred Jamie to Jackson Memorial Hospital, where, if the family proved they had established residency in Miami-Dade County, he could have qualified for indigent care. At the very least, Maitre argues, her son's quality of life would have improved.
On a breezy September afternoon, Maitre exercised her son's inert body as he lay on the carpeted floor of the bedroom he shared with his mother at the Apartments on Devonshire in Miami. "Jamie was always out in the sun," she says smiling as she massages his legs. "He was always doing crazy little-boy stuff. But right now we're just dependent on God to make a miracle in his little life. He's always asking, “When will I walk?' He has lots of questions that I cannot provide answers to."
Maitre has doubts as well, doubts that no one has been able to allay. Perhaps no one ever will.
