*Physical disability doesn’t have to be fate*

Jerusalem’s Alyn Hospital has for 80 years treated and rehabilitated infants, children and teens suffering from a wide variety of injuries and congenital diseases.

By JUDY SIEGEL-ITZKOVICH
Prosthetic limbs (photo credit: JUDY SIEGEL-ITZKOVICH)
Prosthetic limbs
(photo credit: JUDY SIEGEL-ITZKOVICH)
Staffers at Jerusalem’s Alyn Hospital used to be satisfied if the children they cared for managed to move from point A to point B in a wheelchair or with a walker.
Today, said Dr. Maurit Beeri, director- general of the country’s national center for pediatric and adolescent rehabilitation of physical disabilities, they aim much higher.
“We believe that it is the right of every child – including those suffering from physical challenges – to have the best quality of life possible. Therefore, Alyn provides the tools to all patients and their families so they can learn how to cope with their condition and reach their full potential, helped by their family and the Alyn staff.”
One of the world’s leading specialists in pediatric rehabilitation and the only facility of its kind in Israel, the hospital diagnoses and rehabilitates infants, children and adolescents suffering from physical disabilities, both congenital and acquired (such as from road accidents, falls and terror attacks). Alyn, founded 80 years ago, has 120 inpatient beds and 600 inpatients a year, along with 20,000 outpatient visits to its clinics.
Patients come to the center in the capital’s Kiryat Hayovel quarter from all over the country and from abroad for its multidisciplinary care and are rehabilitated there regardless of their religion, ethnic origin or language.
Its outpatient clinics focus on everything from spina bifida and spinal cord injury to leg braces and spasticity. To raise a child’s motivation so that they make progress in their rehabilitation process, Alyn adds animal-assisted therapy, computer technology therapy, virtual reality games, medical clowns, hydrotherapy and exercising in the hospital’s therapeutic sports center. Throughout the rehabilitation process, patients and their families are closely assisted by nursing staff, social workers and psychologists.
A few weeks ago, it held at the capital’s Crowne Plaza Hotel a second conference on child rehabilitation, with the discussions including the use of robotics technology to enhance outcomes for children with cerebral palsy; social networks; metronome training for children with brain damage; and diaphragmatic pacing as a respiratory rehabilitation tool.
Prof. Arnon Afek, a medical administrator who only a few weeks ago became director-general of the Health Ministry, spoke briefly to the conference participants.
“I originally come from Sheba Medical Center at Tel Hashomer that regards rehabilitation as a major task,” he said. “We save people’s lives, but that’s only the beginning. The patient should leave the system with maximal function. So rehabilitation is the correct model – but it’s not good enough. There are very few rehabilitation beds around the country.
We are going to expand them. Alyn Hosptial’s work to help children reach their maximum potential is not trivial in my eyes. At Alyn and other rehabilitation facilities, the patients are among the weakest in society, but the staff people really care,” said Afek.
"WE AT the hospital are older and more experienced; we don’t really know the language of the kids who use What’s App and other cellular phone applications and social networks,” said Beeri. “There is definitely a gap between Generation Z and us. Other changes are that, fortunately, we have fewer trauma patients, including victims of terror attacks, than we used to. The last patient we received who had been severely wounded in a terror attack... was wounded at the Central Bus Station three years ago. But we now get children and teens with more complex problems who need intensive care, chronic pain syndromes and somatoform disorders [mental illnesses that cause bodily symptoms that can’t be traced back to any physical cause].”
The World Health Organization’s model for child rehabilitation is comprehensive.
“Health,” continues the Alyn director, involves all functions. It is determined by activity, the functioning and structure of the body, the environment and personal characteristics.
Even at three months of age, a baby has a temperament and personality.”
The doctors and nurses don’t just tell the parents and children what they must do. “We all have to work together. Everyone in the multidisciplinary team has his own expertise. How well the patient will do also depends on how the family members’ functioning. One can see two children with the same disability, but one will remain severely disabled and the other will be able to function well depending on how much the family can help,” Beeri continues.
There are five F’s of child rehabilitation.
These are fitness, function, family factors, friendship and fun. They need to have fun to develop physically and emotionally. This is a more holistic approach, said Beeri. “We now look at the children’s future in a more positive way.”
Children everywhere, and at Alyn, hardly play ping-pong anymore; they do it on a digital console. They have a lower level of patience. Their motivations and interests are different, said Beeri.
“The borders are fuzzy. Kids send smartphone messages in abbreviations, much of it in English. There’s a gap between the kids and their parents and between the kids and our medical staff. There is a difference depending on whether the medical staffer is younger or more veteran. It has gone from the hi-fi of my generation to the wi-fi of today.”
All of this can affect rehabilitation of children with cerebral palsy, brain injuries, spina bifida, neuromuscular disorders and others. Children used to die from these conditions, but technology keeps them alive, so they have to be assisted in functioning as much as possible.
Among the latest devices invented for the disabled is the ReWalk, an Israeli-developed “exoskeleton” system that enables people paralyzed in the lower parts of their bodies to stand and walk. Just approved by the US Food and Drug Administration, ReWalk was developed Dr. Amit Goffer, who was inspired to develop the ReWalk exoskeleton unit because he himself is quadriplegic. He founded Argo Medical Technologies in 2001 to create a patented product that would enable persons with spinal cord injuries to walk again. Over the past decade, Argo has grown from a small research and development start-up based in Israel to an international company with headquarters in the US, Germany and Israel.
The paralyzed person wears the device, which is an “external robot” that moves the hips and knees so they can walk even though their nerves were damaged or destroyed. Paralysis victims can thus get up from their wheelchairs and move about on their legs, looking at others from normal height. They need to wear a backpack to bear the ReWalk’s computer and battery, and a control with buttons is worn on the wrist.
Based on natural walking movements of the legs, ReWalk can improve patients’ cardiovascular health, halt the loss of fat tissue and boost their muscle and gastrointestinal performance. They also suffer less pain, need to be hospitalized less frequently and need to take less medication.
Although prices are $65,000 and up, the exoskeleton technology will probably become cheaper and would surely be a boon to paralyzed children and teens at Alyn.
“The exoskeleton will help the disabled function much better, not only to overcome disability but to help them be faster and stronger than a healthy person. In the future,” predicts Beeri, these devices will interface with our brains and be operated directly by the brain.
Already today, Alyn uses special pillows to measure pressure on parts of the body to prevent the development of pressure sores, which can develop into serious infections.
Google Glass, a small wearable computer with an optical head-mounted display that displays information in a hands-free format, will also be a boon to the physically disabled. Smartphones can be used instead of joysticks, simply by changing the angle at which you hold them.
“This is a new world that we ourselves don’t really understand.”
Other changes with which the medical profession must cope include protecting the privacy of patients despite the sending of email and SMS messages and being part of forums. In addition, medical students don’t have to learn everything by heart any more. Information is available at the tips of their fingers by smartphone.
“I must admit that it’s an important advance from trying to decipher the bad handwriting of doctors. Now it’s all digital,” said the Alyn pediatrician.
There is plenty of information available, she continues, “But there is a downside – such as the lack of differentiation between real experts and laymen [who think they are experts]. There are many people who provide information but have a personal agenda. We are exposed to an oversupply of data. A doctor will give a diagnosis, and the parents say they just read an article on the Internet that the physician himself has not yet read. This can lead to a lack of faith in the doctor.”
Parents read reports of “new” treatments that haven’t even been studied and are not available to the patients. There are complementary medicine and commercial interests. Everybody is selling something. Families want a cure to their children’s problems, but we can almost never supply it,” said Beeri.
ALYN BROUGHT over for the conference a guest speaker from the Rehabilitation Institute of Chicago, Prof. Deborah Gaebler-Spiro. Affiliated with the Northwestern University Feinberg School of Medicine and Children’s Memorial Hospital, the facility had 150 beds. Gaebler-Spiro, who specializes in pediatric rehabilitation, works only with children.
“I toured Alyn and found there is brilliant interaction with the parents and children. This is a very good social-medical integration model. We in the US are more medically driven. Our catchment area in Chicago and even outside our state of Illinois is so broad that it’s harder to get the family involved,” she said.
An exhibition of mostly imported equipment for disabled children – held outside the Crowne Plaza ballroom equipment – had items similar to what is available in Chicago, said the American pediatrician. “But in the US, not everything that is available meets the patient’s needs. A child may get a power wheelchair, but there is no elevator leading to his or her apartment.”
In addition, “children hold a special place in our hearts, but as they grow older, there is less of a tradition of supporting them. It is much harder to get funds when they reach 18 or 21.”
The biggest change between now and when Gaebler-Spiro studied medicine at the University of Chicago is that “we know [now that] we can improve neuroplasticity with certain techniques. What they start with is not their inevitable fate. Their abilities can be improved. Children with cerebral palsy who are given robotic technology will do much better.”
Her rehabilitation institute, which was founded in the 1950s to cope with children stricken by polio who needed to be in iron lungs, is now involved with regenerative medicine, including stem cells. “There’s an explosion in technology. Equipment is lighter, faster and cheaper.”
Cerebral palsy affects 100,000 US kids up to the age of 18. Including those who survived into adulthood, CP affects 800,000 Americans. Working closely and constantly with engineers, her medical staff improve strength, tone, balance and motor control.
“We developed a passive stretching device to help the foot below the ankle. The children move virtual food around on the screen. By moving a foot, a helicopter seems to crash through a wall, thus strengthening their muscles. Stiffness of their joints and spasticity of their muscles are alleviated. The child can even do this at home through tele-rehabilitation,” explained Gaebler-Spiro. “We trick them into doing rehabilitation. A child with one functional toe can get a drink by himself. Even babies can drive robotic cars. The earlier they can do this, the better. Robots can be fun, perfect for practice, provide feedback during treatment and provide reinforcement.”