For a doctor or nurse, watching a patient on the edge of death get up and walk out of the hospital is the greatest reward; for a teacher, it is seeing a troubled and failing pupil excel in tests, understand a difficult concept or adopt admirable values.
But for the dedicated staffers in a school for 27 children – all severely brain damaged, living most of their lives in bed and attached to a respirator – there are less-dramatic but no-less-satisfying rewards: the movement of a few fingers or legs, the fluttering of an eyelid, a grunt or a tiny smile.
The educational facility at Jerusalem’s Herzog Medical Center, which otherwise treats hundreds of chronically ill elderly and mentally ill patients of all ages, is apparently the only school of its kind in the world.
Following the receipt (after many delays) of all Jerusalem Municipality authorizations and the payment of money owed by the Education Ministry to Herzog for the school, the children, staff and equipment will move to more spacious and advanced facilities on the sixth floor of Herzog’s new building.
In the rest of the world, children with such severe disabilities and poor prognoses are automatically disconnected from their respirators with permission from parents. But Israel is different. The 2005 Terminal Patient Law, formulated in a committee headed by Prof. Avraham Steinberg, prohibits active euthanasia, explained senior pediatrician Prof.
Rena Gale, for the past nine years director of Herzog’s children’s respiratory unit.
“Abroad, if a premature baby has a brain hemorrhage, the doctors say it has no prognosis, and they just disconnect the respirator. But here, the culture is entirely different. Jewish parents wouldn’t allow it. And even though some extreme Muslims run around stabbing people to go to heaven, I haven’t encountered an Arab family that is ready to cut them off from oxygen.”
In any case, she would have nothing to do with disconnecting respirators and letting children die – “because of the Holocaust, when so many defective children were murdered.”
Gale told The Jerusalem Post during an extensive visit to the unit.
“I was a little girl in Poland, and my mother and I survived by hiding in the attic of a Christian family,” Gale recalled.
The unit thus had nowhere to look in the world medical literature to guide them on caring for the children.
“We fed them regular amounts of calories by feeding tube, but we quickly found they became obese, as they hardly move. Now we feed them just half the amount of calories.”
Gale noted that half of the children were born with congenital or hereditary defects and never lived a normal life; the other half became brain damaged from accidents such as near drowning, road accidents, abuse or other unfortunate events. One, for example, suffered severe brain damage from oxygen deprivation when falling into a tub of olives when family members were busy picking the fruit.
Genetic disorders are often the result of inbreeding among Arab cousins.
Looking at children who spend their entire lives in beds attached to respirators and barely moving is not an easy sight to see. Some dignitaries, including Jerusalem Mayor Nir Barkat, Health Minister Ya’acov Litzman, Ra’anana Mayor Ze’ev Bielski and former deputy education minister Avi Wortzman have been to the unit. Just in case visitors feel faint, the unit director is always alert for signs of pallor on their faces, to escort them out of the wards to regain their composure.
AMAL HAMATI, a Christian Arab from Beit Jala near Bethlehem, previously worked at the school for hospitalized children at the Hadassah University Medical Center in Jerusalem’s Ein Kerem. “I studied special education at David Yellin Teachers College and earned my master’s in education management in Or Yehuda. Almost three years ago, I was asked to set up this school at Herzog. Nothing existed before,” said Hamati. The school is paid for by the Education Ministry and run and supervised by Hadassah, but soon we will be independent and make decisions ourselves.”
There was initially a school for severely disabled ventilated children at Reuth Hospital in Tel Aviv, but it failed, and the institution will try again. Jerusalem’s Alyn Hospital also has a school, but their children are much less severely disabled, and its staff works to rehabilitate and discharge them, notes Hamati.
“It was strange and scary. There was only a mattress on the floor that I sat on. Now, we have 13 staffers, some of whom studied special education, and the others are regular teachers who have experience with youngsters with mental disability. We are a school without classrooms. We teach them in their beds. We stimulate all their senses.”
The children come from all over Israel – Jews and Arabs, secular, religious and ultra-Orthodox. They spend their whole lives in Herzog.
“Some parents visit often, while others occasionally and a few not at all; that is very sad.”
A personal file with basic information – the children’s preferences and what they react to, as well as a personal treatment program – is attached to each bed in the colorfully decorated wards. The hospital has hired physiotherapists, occupational therapists and other professionals.
The school’s staff includes Michael Gindin and Dana Harush, who are in charge of the musical program. All of the children can hear – two with hearing aids and the others naturally.
As many have visual limitations, the sense of hearing is very important,” said Harush, who plays the flute.
“At first I was in shock when I saw the children, but very soon I felt I wanted to be here and that I belonged. I thought I could contribute,” said Harush, who plays music to the children full time. Sometimes she plays alone and sometimes with Gindin.
“When we play, some smile, and we can see the children move their fingers.
But sometimes they don’t react; this is very frustrating,” said Gindin, who came on aliya 22 years ago from Russia, where he worked in special education and plays the accordion and drums.
Those who were not born with the disability are stimulated with music by memories of the past – hassidic music for a boy from a haredi (ultra-Orthodox) family or Arabic melodies for a Muslim boy.
ANOTHER STAFF member, a nineyear- old, brown-haired mutt named Mogli, works with the children on a daily basis. Michal Yair, who was trained in therapeutic teaching using animals, brings the dog from her home to the school every weekday.
“We are not afraid of him transmitting any bacteria or viruses to the children. But as the kids have very weak immune systems and there are bacteria that impossible to eliminate from the water systems attached to them, we have to be very careful.
Mogli – who suffered from abusive owners before Yair took him from a voluntary organization that finds homes for dogs instead of them being put to sleep – is placed on a blanket on the child.
“We disinfect their hands with alcohol so germs are not passed among the children via the dog.”
Yair said. The mutt had been so badly treated that he ate his claws and used to dig sand and push it with his back legs into her house. But this behavior disappeared with good care.
All of the tubes and noises from ventilation equipment can be overwhelming, but Mogli – who has soulful eyes that never look at the children – knows not to make sudden movements or bark. He clearly enjoys himself when cuddled and petted for 10 to 15 minutes apiece and is very patient while the young patients touch him. “The children feel the warmth of his body, touch his fur and smell him.”
Yair also uses rabbits and occasionally hamsters for touching sessions with animals. “We hope to have a pet corner in the new building.”
The teachers also tell the children stories and even have a shadow puppet theater, although they don’t know if all the patients get something from this. “We built dolls and combine musical effects into plays. The music is according to the traditions of families. We even play classical music like Bach, but when the Post visited, Gindin and Harush were performing Hanukka songs. On Fridays, they bake hallot and make other food for the staff, so the children can smell the home cooking to which they are never exposed.
A TOTAL of 70 youngsters have been treated in the respiratory unit in the last nine years. Of these, 11 have survived long enough to go on to Herzog’s adult unit after the age of 21. But the average patient survives for only five years, because of infections.
“We usually know when a child is deteriorating,” said Daniella Geudj, a Paris-born social worker who has worked at Herzog since 1982 as a social worker. “When a doctor announces a death, we inform the family. It is hard for them, even though in the long term, it is probably better. We usually don’t go to the funeral, but prefer to go to the shiva. We don’t have contact with some parents who don’t come to visit often or at all.”
A death, usually due to sepsis, is traumatic for staff members, who treat the children with great love and devotion – bathing, dressing, feeding and hugging them. As they are turned over regularly, none of them has developed potentially deadly pressure sores. The staff regards them all as “pure souls,” said Geudj. Support sessions are held to help them cope with their grief.
“One really has to love them,” said Hamati. “You touch them with their discharges and hear the noise of mechanical devices. We believe that we should never give up on them. We are always trying things to improve the quality of their lives, even if we can’t extend their lives.”
“That is our mandate,” asserted Dr.
Julia Namestik, a senior gerontologist who came to Israel from Tashkent 24 years ago with experience in working with elderly patients attached to ventilators. To work at the Herzog unit, she updated her knowledge on treating children in the same situation.
“We have scientific proof that they feel, as one can see electrical activity with an electroencephalogram and blood flow to parts of the brain that function using a functional MRI.
Strong people, mostly women, work here,” said Gale. “Our biggest but rarest success is if we manage to get a child to breathe without a respirator and are able to transfer him or her to another institution or send them home.”
While one would think it almost impossible to find devoted caregivers for the children, it isn’t as difficult as one would think. Maintenance workers – Jews, Muslims, Christians, new immigrants from Russia and Ethiopia – who are interested in upgrading themselves take a three-month course as auxiliary workers. “They are given white coats and feel so proud,” said Gale. “They get higher status, and we even found that their children get higher grades in schools.
This is a double blessing.”
THE SCHOOL fulfills at least two functions, neither of which is a true “schooling function” in the classical “3Rs sense,” said Herzog Medical Center director-general Dr. Yehezkel Caine.
“We stimulate each child individually, exposing them to different stimuli that in the normal course of hospitalization they would not receive, and that are essential for normal brain development. As we really don’t know what the stimuli that we provide do for them, we can only surmise, but we do have a fairly large body of literature on sensory deprivation. If all the severely disable child heard/saw/ smelled/tasted and felt was the same beeping, voices and lights, there is no way that the brain could develop – especially a damaged brain.”
One could make a case for “why bother,” as they are irreversibly damaged anyhow, Caine continued.
“But we believe that the brain plasticity is such that, especially in the child, the greater the stimulus, the greater the chance that some portions of the brain will be goaded into functioning. We are not going to produce Einsteins, but every bit of function retrieved is function regained.
We have had a few notable successes.
The vast majority do not recover sufficiently to go home, but those who do are a net gain to the families and to society.”
The second reason, concluded the director-general, “is social, as interaction with the children, among themselves and their families is of great importance. All the societal barriers have evaporated there, and this in itself is something