Alyson Mead

The new initiative began three years ago, when Dr. Fred Epstein, a neurosurgeon, joined the staff of Beth Israel. With Dr. Alex Berenstein and Dr. Matthew Fink, he created the Institute for Neurology & Neurosurgery (INN). Among their goals was to facilitate compassionate healing with holistic care and to marry traditional Western medicine with ancient healing techniques from around the globe. After contacting professor Robert Thurman, a noted Buddhist scholar and friend of the Dalai Lama, Epstein and the other INN doctors invited his holiness to attend the landmark East/West Medical Conference in New York last May. Their goals were simple yet lofty: to develop studies on the clinical applications of meditation, and to research how these two traditions might be integrated to provide the most compassionate care for patients, their families and health-care professionals. “I had learning disabilities when I was young,” Epstein says. “So I understand what it’s like, and I’m not afraid to look dumb or to try something new.”

It was while he was at this conference that the Dalai Lama agreed to consecrate the 14th-floor terrace, which previously had been used to store machinery. It was chosen because Jonathan’s father, Alan Abramson, a real-estate entrepreneur and Beth Israel Medical Center trustee, saw how fitting it was that the site overlooked Carl Schurz Park, and the Esplanade that had provided Jonathan with so many hours of joy. After a tour of Beth Israel’s pediatric ward and playroom, the Dalai Lama performed a brief ceremony in Tibetan, blessing the space as a sanctuary for healing. The Safe Harbor was underway.

Since the conference, health-care professionals from both East and West have been working out the details of these groundbreaking scientific studies. In conjunction with Tibet House and Columbia University, meditation practitioners will cooperate with scientists to measure meditation’s effects in varying therapeutic contexts, including stress management for patients, their families and the nurses who care for them, as well as pre-surgical relaxation and post-surgical recovery. The timelines for these experiments are being finalized now.

In the year since the Dalai Lama’s visit, Beth Israel has engaged Dr. Lobsang Rapgay, a leading practitioner of Tibetan medicine and professor of psychology at the Norman Cousins Center at UCLA, to design a series of workshops that would teach meditation techniques to staff nurses. Rapgay finds that the healing meditations he teaches, based on the teachings of Tibetan Buddhism, can help sick children to be receptive to their own condition and less susceptible to distractions as they move through treatment.

Patients sit quietly in a cross-legged posture, their palms resting on their thighs. With eyes open, meditators are urged to simply watch the thoughts that move through their minds, not judging or labeling them. In time, the mind becomes more restful. “Meditation helps both the practitioner and the patient to move into a state of mind that is restful but also alert and aware,” Rapgay says. “It helps people to be attuned to each other, and they’re more likely to understand what’s going on with their treatment. It’s very important for these sick children.”

In designing the workshops, Rapgay sought to ground the nurses with Western methods such as cognitive restructuring and other psychological styles of intervention, then to use that framework to introduce Eastern methods of healing. Many of the 12 nurses currently attending the workshops have never practiced meditation and have only the barest frame of reference for its use. Most follow one of the more traditional religions, such as Judaism, Catholicism or Protestantism.

Despite this, Rapgay has found the nurses to be dedicated to providing their patients with the most compassionate care possible. “In a long-term setting, meditation can help the children deal with control issues around their illness and allow their pain to dissipate,” says nurse Jennifer Caldcleugh. In August of this year, the group will hand in a patient follow-up and final paper. Rapgay will teach one last weekend workshop at that time, and then the 12 original members will school the next generation of pediatric nurses in meditation techniques.

In addition to its stress-management applications, meditation can also be useful in gaining a patient’s trust and compliance, and for the management of any pain. Since the patients are small children, and often frightened of the tubes and machinery of chemotherapy, nurses feel that talking with the child directly and then modeling the meditation techniques will help alleviate anxiety. Many of the nurses say they have brought the meditation practice into their own lives to help them connect with people in a broader sense. Nurse Marsha Lehr says it has helped her deal with the recent loss of one of her ward’s children. “When you lose someone, meditation helps you deal with the pain and get closure.”

The Beth Israel meditation program bypasses the findings of a 1996 National Institutes of Health assessment panel, which found that complementary therapies such as meditation may have healing effects, particularly in the reduction of chronic pain, but that its results are not quantifiable. Of greatest concern were several barriers to the application of complementary therapies, not the least of which is inadequate access to training programs. In addition, the panel saw “a lack of standard methodology to assess the success or failure of these interventions, a low compliance rate on the part of the patient because these interventions are time-intensive, and an unwillingness on the part of some insurance companies to provide reimbursement for certain treatments.” It recommended additional research and education.

Alan Abramson wasn’t willing to wait for more research. He wanted his dream fulfilled, and hired San Francisco landscape architect Topher Delaney to help. “When I met her,” he says, “there was no one else I wanted to work with.” From their first meeting, Delaney seemed a natural choice to build the Safe Harbor. An acclaimed designer of healing spaces and gardens nationwide, Delaney brought a special sensitivity to the Beth Israel site as a breast-cancer survivor. “When your body is no longer in control, it changes your view of what time is about and what work is about,” she says. “Now, I want to leave the world a better place.” So far, her work has brought healing spaces to hospitals in San Diego and Oakland, Calif., and Victoria, Texas.

The Beth Israel terrace garden depicts the bridges of Manhattan in sequence. Each bridge is distinctly different in perspective, subtly communicating Delaney’s underlying metaphor of diversity in culture and viewpoint. The design’s wit is evident throughout. The bridges symbolically represent the journey from sickness to health and, as a patient crosses that bridge, letters from many languages, including hand signings, are there to provide company. A little farther down , the Statue of Liberty rises through the Brooklyn Bridge, connecting freedom and language. Highway reflector disks interspersed among the bridges catch the light, and everywhere there is something that attracts the eye.

The rooftop terrace has an aquatic theme. The floor, made from sections of colored rubber, has brightly colored fish designs. Along the perimeter of the building is a series of iridescent fishing lures, built into the wall tiles. Fringed Chinese umbrellas provide shade for those who want to rest, while several tables feature creative activities: a tile table for water play shaped like a whale; an octopus table with several bowls filled with sand and a long tube that kids can talk into while someone listens from another tentacle; and a fish-shaped table inlaid with black terrazzo tile and abalone shells, with a map of the world with the longitude and latitude lines forming a chess board. Overhead, wind chimes emit soft, sparkling sounds that make the wind seem human.

Delaney hopes that the playful space will be a sanctuary for Beth Israel’s patients and families. She tells a story about a woman weakened from chemotherapy, moving gingerly into one of her gardens in San Diego. As Delaney tried to help her back into the hospital, the woman explained that she came outside every day for the water in the fountain, because it made her feel better, and she was sure it would help her to get well.

It’s been a long journey for Alan Abramson, who has been searching for a way to remember his vibrant son for 18 years. Now, on the eve of what would have been his graduation from college, Jonathan’s memory will be honored with the Safe Harbor. Sen. Charles Schumer, D-N.Y., was to join Alan and Patty Abramson, as well as their two surviving sons, Adam and Josh, for the official unveiling, and for Abramson, it’s been well worth the effort. “To us, it represents an opportunity for closure,” he says. “Every day, something good will come from Jonathan’s energy and I feel like he will not have died in vain.”

The decision, even though it will come from a Canadian court, is expected to have significant impact in the U.S., where parents who withhold medical treatment from their children, often for religious reasons, have found themselves in court with no legal precedent to guide their arguments. Their opponents struggle in the same void, as decisions tend to vacillate on a state-by-state, case-by-case basis.

Dr. Seth Asser, an associate clinical professor of pediatrics at the University of California at San Diego’s School of Medicine, finds the overall emphasis of court rulings in the United States to be “consistent” with his opinion. As a board member of Children’s Healthcare Is a Legal Duty (CHILD), his mission, and that of the group, is to “protect children from abusive religious and cultural practices.”

“Sometimes the parents have religious reasons, or an adherence to folk medicine to prevent medical care for diseases with viable treatments,” says Asser. “But when the reasons are capricious, like wanting to use herbs that havent been scientifically tested, the courts generally say that the parents are free to make martyrs of themselves, but not their children.”

But more and more often, these battles specifically involve HIV and treatment with antiretroviral drugs — in utero, in breastfeeding and later in a child’s life. Religion, folklore and herbs don’t often figure into these arguments and the outcomes have been as unpredictable as the effects of the disease and its still-controversial treatments.

In a custody hearing held in April in Eugene, Oregon, an HIV-positive mother was told by the court that she could not breastfeed her son, who is HIV negative. She was allowed to keep the baby in her home, but he is technically in the states custody. In a mildly farcical arrangement, a social worker visits once a week to make sure the child is not breastfed.

Meanwhile, in a case last year that is likely to be cited in Brassard’s hearing, Valerie Emerson, a mother in Bangor, Maine, won the right to withhold AZT from her second child after her firstborn, who had been on the drug, died just before her 4th birthday. Though no formal ruling was made about whether the drug killed the girl, Emerson believes that it did and she prevailed in the hearing. (Her son, who still has not taken AZT, is currently healthy.)

The relative merits of AZT, a drug developed 30 years ago as a form of chemotherapy and later found to be potentially effective against the spread of AIDS, will be on trial in Brassard’s hearing. But so will her rights as a parent of a sick child. The issue of parental prerogative when a child is gravely ill has fueled years of impassioned and confusing debate in Canada and the U.S. In Brassard’s hearing, as in every trial that has pitted parents against doctors and child advocates, each side will claim the same motivation — saving the lives of ailing children.

“Mentally, I was preparing myself to go to my childrens funerals,” says Brassard. “There were times when I wanted to kill myself, but then I realized I had to keep fighting, for the sake of their health.”

Ridiculous, says Dr. Mark Wainberg, president of the International AIDS Society in Canada and the inventor of antiretroviral drug 3TC. He maintains that Brassard and other “AIDS dissidents” are comparable to Holocaust deniers. They are, he says, “ill-informed, confused individuals who either do not or cannot understand the issues involved.”

Brassard, who found out she was HIV positive in 1989, says that she was both healthy and well-informed when she became pregnant in 1992. She was aware that the chance her infant would be HIV positive was roughly 25 percent in a vaginal birth and 10 percent if a Cesarean was performed. She decided to have the baby.

She also wanted to give birth with the assistance of a midwife. But when her sister found out that Sophie was not planning to have a doctor present, she called Youth Protective Services. Brassard was in the middle of labor when five men — a social worker, a Youth Protective Services administrator, a doctor and two police — entered her apartment and forced her to go to the hospital.

Immediately after the birth, a pediatrician came into the room and took the baby away from Brassard for its first formula feeding. When Brassard said she wanted to breastfeed, her physician protested; but Brassard was permitted to nurse the baby for a year and a half.

Brassard avoided the first battle — over breastfeeding — primarily because her child was already HIV positive. It is generally believed that HIV can be transmitted to an infant through breastfeeding, and mothers who are HIV positive are advised not to nurse. But not all studies have supported this notion. Brassard and her supporters point to the results of a recent South African study, published in the Lancet in August, which concluded that HIV was not necessarily passed through breast milk. Researchers from the Department of Pediatrics and Child Health at the University of Natal hypothesized that the immune factors inherent in breast milk can work to “neutralize” HIV.

When Brassards first child began losing weight at 18 months, her social worker insisted that she take him to a doctor who would prescribe treatment with AZT. But Brassard, who favors homeopathic treatment and believes in self-healing, said no. Ultimately, she compromised with the social worker by taking her son to a homeopathic doctor.

That doctor saw her son once a month for close to a year, but when the child developed a fungus in his mouth, the doctor gave her an ultimatum: Take the child to a specialist or get reported to Youth Protective Services.

Brassard panicked. Firm in her belief that people who are HIV positive can live long, healthy lives without drugs, she was terrified that a doctor’s intervention would harm her child. If she stayed in Canada, the doctors would give her son AZT, a drug she believed would kill him. So Brassard bought two tickets to Italy and, without telling anyone where she was going, left the following morning. She went underground.

Despite its widespread use and apparent efficacy against the symptoms of AIDS, AZT has remained a controversial treatment that is routinely rejected by those who choose alternative treatments for AIDS. They cite a 1993 Concorde study, the results of which were subsequently printed in the Lancet, in which patients who took AZT died sooner than those who took a placebo. They also point out that AZT is acknowledged, even by doctors who prescribe it, as having side effects that include anemia, muscle wasting, hair loss, neuropathy, dementia, nausea, diarrhea and other digestive problems.

Perhaps the strongest statement against AZT comes from Dr. David Rasnick, a developer of protease inhibitors at the University of California at Berkeley and the president of the Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis.

Asked about the Brassard case he said, “AZT is a DNA-chain terminator. That means it terminates a person’s DNA, which stops cell division, which stops growth and, eventually, all life. If her children are forced to take the drug,” he says, “they wont last two years.”

But proponents of AZT say the drug has become more effective in “cocktails” mixed with protease inhibitors. David Winslow, who represented the Maine Department of Human Services in the case of Valerie Emerson, told the court that AZT had reduced AIDS deaths nationwide by 47 percent last year.

And in Toronto, Dr. Philip Berger unequivocally recommends antiretroviral drug treatment for patients who are HIV positive, especially the young. “If the drugs are given to a baby within hours of birth, the odds of it developing HIV can be significantly reduced,” he says. “The odds are even better if the mother also takes the drugs during pregnancy.”

Doctors have to be the absolute custodians of children’s care, he says. “Once the child is born,” he says, “I think the state has a duty to protect the child from any disease for which a parent is refusing treatment where the benefits are clear.”

Brassard says she was aware of all the arguments when she left the country. Using the Internet for much of her research, she found organizations like H.E.A.L. and Alive and Well, two support groups dedicated to sharing information about living healthy, HIV positive lifestyles. She also read articles by Dr. Kary Mullis, a Nobel Prize winner, for his discovery of the polymerase chain reaction, and Dr. Peter Duesberg, who was the first man to map the genetic structure of retroviruses. Both men actively challenge the common thinking that drugs are the best way to treat HIV and AIDS.

“I thought I was the only sane person in an insane world,” she says. “But then I found people with Ph.D.s who believed in the same things I did.”

Brassard and her son lived outside Rome for two years. She worked odd jobs and says that her 2-year-old boy was happy and healthy. She took him to a doctor only once during that time, for a routine check-up; Brassard herself visited a homeopath as needed. She fell in love and became pregnant again, this time buoyed by the fact that she and her son were both maintaining good health. Eventually, however, her relationship became violent, and she moved back to Canada in 1996.

Brassards second child was born at home under the supervision of a midwife. He tested positive for HIV. Brassard breastfed him and things went smoothly for the next year. After a brief stay in Mexico, to escape the scrutiny of Youth Protective Services, she returned to Canada. Shortly after she arrived, she was turned in to Youth Protective Services by a neighbor. Brassard and her children took mandatory blood tests and her doctor again urged her to put the children on the antiretroviral drugs.

Brassard refused to give her children the drugs and took them back to Italy, hoping to resurrect the relationship with her second child’s father. It didn’t work out and she returned to Canada in 1998. This time, Brassards father called Youth Protective Services, after her eldest son, who was 7, developed an ear infection.

The child was hospitalized and put on antibiotics for the first time in his life. The pressure on Brassard from doctors, nurses and her social worker to put both children on drug cocktails, which included AZT, increased. So Brassard made a decision to leave the country for good.

Slowly and discreetly, she sold all of her possessions and sublet her apartment, making sure that her father would not find out. The buyers of her belongings came to collect their purchases the night before Brassard was supposed to depart for Italy. The next day, her apartment was completely empty.

Friends had agreed to help Brassard find schools for her kids in Italy and a job that could support all of them. The trio made it to the airport and past the metal detectors without incident. “I remember thinking, whew, we made it,” Brassard says. They were approaching the boarding area when a police officer asked for her ticket. She was detained there until an emergency court could be assembled. Her two children were remanded into the custody of Brassards parents.

Brassard went online and found the International Coalition for Medical Justice, a nonprofit organization created to support victims rights in cases where they believe coercive medical treatments have been employed. They helped her to find and pay for a lawyer.

Meanwhile, Brassards older child developed pneumonia. He was hospitalized and given intravenous antibiotics, but his condition worsened. The doctors prescribed AZT, 3TC and a protease inhibitor. Brassards parents raised their concern that the drugs would be too strong for a young child. Brassards mother, who is a nurse, thought her opinion would carry weight with the medical staff. But in October, after a flurry of court activity, the children were removed from their grandparents care because they, too, had refused to allow the antiretroviral treatment.

Both children, now in foster care, are being treated with a drug cocktail, which includes AZT. Brassard has been allowed one supervised visit each week, in the social workers office. She is not permitted to speak with the children by phone anymore, since the social worker overheard her telling one of them to flush the medication down the toilet. (He had complained to his mother that he kept throwing up when he took the medicine, only to be given another dose.) Brassard does not know where the children live. She says that during visits, they tell her they want to come home.

Since she was caught at the airport, Brassard has lost her apartment and her job. At the moment she lives on public support in Montreal while she takes college classes in international commerce at College LaSalle. She says, “The horror of this is that my kids are now on one of the most toxic drugs in existence. I have to get them back before any permanent damage is done.”