Equal treatment

Alyn Hospital grapples with challenges of providing care to children from both sides of the green line.

asdf 88 (photo credit: )
asdf 88
(photo credit: )
Five-year-old Maria Aman is paralyzed from the neck down - a respirator breathes for her, a computer writes for her and a motorized wheelchair moves for her. Her smile is enchanting, and when she speaks her delicate voice seems to dance gently in the air. Sitting outside Alyn hospital in a rotunda, the rolling hills of Jerusalem in the background, a light breeze in the air, her father Hamdi Aman talks about the tragedy that struck his family on May 20. "We were driving in our new car in Gaza City, when a missile from a helicopter hit the car in front of us." The helicopter attack reportedly assassinated Muhammad Dadouh, Islamic Jihad's most senior militant. The debris and shrapnel shredded the Aman family car, killing Aman's wife, his mother and one of his sons. Aman was struck by shrapnel in his neck and leg. Maria's spine was fractured and both her lungs were punctured. According to Dr. Maurit Beeri, the head of pediatric rehabilitation day care, Alyn, a world-class pediatric rehabilitation center located in Kiryat Hayovel, is the largest facility of its kind in the Middle East. Founded over 50 years ago, Alyn is temporary home to 37 inpatients, and has 100 beds for day-care treatment and an out-patient clinic that sees between 4,000 and 5,000 patients a year. Children travel from Turkey, Jordan and Europe to be treated at the hospital. Some patients, like Maria Aman, are from the West Bank and Gaza. When Maria was first hospitalized, Aman struggled to get permission to enter Israel to see her. His uncle cared for Maria in the meantime. Eventually Hamdi received permission to enter Israel, but this permission was limited to the hospital grounds. Since June, Hamdi has lived at the hospital 24 hours a day. "I have a three-year-old son in Gaza with no mother, I'm here with Maria," he says. Now Aman is permitted to leave the hospital grounds and recently he took Maria to the mall. Maria's tragic situation is rare but not unique at Alyn. Other children injured in Israeli military operations have been treated at the hospital. In these situations the government pays for the treatment. "In a strange way Israel is generous. On one hand Israel destroys their lives yet they give them treatment at the same time," says Tamar, a volunteer with the Olive Tree Movement, who visits the hospital regularly. The Olive Tree Movement consists of a group of volunteers who focus their activity on the well-being of Palestinian children through various avenues such as coordinating drivers to take them to hospitals and organizing summer camps. Tamar often brings donated gifts to the families from Gaza and the West Bank who are staying in the hospital. During the month of Ramadan, when traditional Muslims fast during daylight hours, she went to special lengths to make festive food available for the evening, fast-breaking meal. Shlomo Dror, the spokesman for the Coordinator of Government Activities in the Territories, explains the government policy: "When we make terrible mistakes we pay for the treatment without any questions." According to Dror, the government does not have a sweeping policy to determine what treatment is paid for and what is not, but rather examines each case on an individual basis. But, Dror emphasizes, "I have never heard that we refused assistance to someone in need." Dror contextualized Maria's situation within the broader issue of Palestinians receiving treatment in Israeli hospitals. "According to the interim agreement with Palestinians, the Palestinian Authority pays for medical treatment of Palestinians in Israeli hospitals. Israel decided that it would charge Palestinians like an Israeli citizen, which is 40% less than cost. Israel subsidizes every Palestinian who is treated in Israel." Dror reported that between 800 and 1,000 Gazans visit Israeli hospitals each month. WALKING THROUGH the halls of the hospital, Beeri reflects on the reality of Alyn. "Here politics and medicine intersect in a way that we can't separate." Every few steps she stops to greet a parent or affectionately rub the head of a child in wheelchair, often joking in Hebrew or Arabic and always smiling. Beeri recounts an incident only a couple of months ago. "There were three boys who lost their legs to an Israeli bomb. They were brought to Alyn to be treated. I remember I walked into the room where they were lying in beds one next to each other, teenage boys without legs. I ran out of the room and had a good cry and then came back in as a doctor. It was the only time I ever reacted like this," she says. "There is a huge sense of remorse when I meet a child who has lost his former life because of the situation. It is definitely something that is always there." She stresses that this in no way affects the treatment of the children or the way she relates to them. "We separate the treatment that the children receive and the situation that surrounds them. The children receive the same treatment no matter where they come from, there is no grading system where some receive treatment under one policy and others don't." Political tensions also have the potential to affect the relationship between hospital staff and the parents. "Our professional dealings with parents cannot involve personal views. We don't go into what happened," explains Beeri. Tamar's personal dealings with the families from the territories staying at the hospital provide her with insight into their plight. "Sometimes it appears like they take advantage, but they live a desperate life, they have no hope in the future. They see things deteriorating; they lose hope and become more despondent," she says. "There is a level of resentment. But they can't talk about it. They are grateful that they can get treatment and feel entitled to it because their lives are destroyed." BEERI SHOWS In Jerusalem the respiratory ward. In one room there is a haredi woman wearing a wig and next to her is an Arab woman in a hijab; both of them stand over their premature babies attached to respirators. "The cohabitation in the hospital is unique, there are so many other challenges that people have to deal with that they often let their defenses down and create an open environment," Beeri says. "Tragedies and suffering make people see the priorities in life, that we are all human no matter what religion or on what side of the border one lives." This seemingly natural environment of coexistence is exemplified in the hospital school, which has a pre-school for children under five and a program for older children. They serve both the patients of the hospital and day-care patients that need specialized attention. Hebrew and Arabic drawings decorate the walls of the classrooms and Arab and Jewish teachers work side by side. Beeri explains that Arab and Jewish children are in separate classes for pre-school simply because it is hard enough for these children to learn the language of their mother tongue without confusing them with a second language, but all the classes are mixed in the higher grades. A few years ago, Beeri says, a Jewish boy injured in a suicide bombing shared a room with an Arab boy accidentally wounded by the IDF. "The parents would sit in the room together and talk. They didn't necessarily agree, but they sat and spoke to each other," she says, although she also admits that "there are times when the tensions in country are reflected in the hospital." This is true even at the staff level where Arabs and Jews work side by side, but potential tension, says Beeri, is totally overshadowed by the mutual concern for the children. BEERI'S NATURAL SENSE of hope reflects the philosophy of rehabilitation she practices at Alyn. Unlike diagnostic medicine, which focuses on analysis and treatment, the goal of rehabilitation is daily improvement. In other words, diagnostic medicine is about survival, and rehabilitation is about getting back to normal. "We look at rehabilitation for life. The goal is to be a functioning member in society, to get the child to be an active participant in society to the best of their ability. We evaluate what the child has, their abilities, and work with that," explains Beeri. "Treatment includes goal setting with the family. Parents have to come to terms with their child's future. There is often a gap between expectations and reality, only with time can we fill this." An essential aspect of rehabilitation is the ability of the patient to reintegrate to their community. Great attention is paid to the setting the child comes from, which guides much of the treatment and goals. "If they have a school they left we have to create a system for them to be able to return to the school. For example, if a child lives in a one-story house with no stairs we are not going to spend weeks teaching them to walk up stairs." And although the hospital does have long-term care facilities, the goal is always to return the children to their communities as quickly as possible. Reintegration often poses a significant challenge when the patient does not come from a proximal area. "It is difficult enough for patients within the country, but not every place has the same personnel, facilities or policies. When it comes to taking children from outside of Israel it is a bigger issue. Even for a well-developed European country, we need to make sure that the patient can return and receive adequate care. If they won't be cared for properly upon their return they are not going to benefit from treatment," says Beeri. In the case of children from Gaza and the West Bank the lack of resources in their home communities is a major problem. Dror says that since 1993 the PA has not invested any money in the hospital system in Gaza, so the level of treatment has gone down tremendously. This is especially true regarding Maria Aman. As Maria's father plainly says, "We have nothing in Gaza to go home to." Beeri and her team are aware of the reality in Gaza, but they nevertheless admit children from these areas and give them a chance. "We do take children when it's this or nothing. Children like Maria... because this is her only chance to live, we give her a chance even if there is little hope that she will receive the appropriate care upon her return home." Since the beginning of Maria's time in Alyn her father has been an integral part of her care. Parents are required to be a part of their children's treatment because the parents must continue to care for their child upon the return home. However, Beeri notes, Aman's situation is more difficult because he has no one to share the task with. With a sense of duty, Aman describes his daily ritual of changing his daughter's catheter throughout the night, feeding her, bathing her and taking her to school. Through her treatment at Alyn, Maria has learned how to operate a computer by means of pressure switches, and is able to use a mouthstick effectively. She has made significant progress since being admitted to Alyn. "Maria's progress is rare, a direct result of access to medical treatment and improved technology," says Beeri. To date the government has paid for Maria's treatment through the Defense Ministry, at an estimated cost, according to Be'eri of more than NIS 1 million. However, the question of what will happen upon her's imminent discharge looms. According to the medical summary prepared by one of Maria's doctors, Maria has "responded well to a comprehensive rehabilitation program. She is now ready to be discharged from Alyn." The summary goes on to outline 17 items that Maria will require to facilitate her successful discharge home. Included are items such as ongoing ventilation, a motorized wheelchair and a mattress to prevent pressure sores. Aman does not have the funds to acquire these items and many of them are not even available in Gaza. Beeri stresses that Maria should not stay in the hospital for longer than is necessary. "We think she should be with her family and extended family. Staying here is not ideal for her." Dror says he is not aware if his office has received a request to finance the items required to facilitate Maria's discharge. "The moment they ask I believe we will help. I believe that if there will be a necessity we will provide it." However, as Maria's stay at Alyn comes to an end the challenge of procuring funding for her treatment falls on her father. "We want to empower [him] to understand what she needs so he can lobby for it," says Beeri. "We can't do that for him."