What is the life of a physically disabled child worth? It’s a cruel, but
important question for the devoted people who work in pediatric rehabilitation
as well as Treasury officials who want to cut costs and medical ethicists who
think about what is morally right.
The annual financial cost of taking
care of an Israeli child with cerebral palsy, muscular dystrophy or other
disabilities is around $50,000. The US Environmental Protection Agency
calculated that the “statistical value” of a coal miner, calculated by how much
the government would invest in preventing him from dying in a work accident, is
$6.1 million. Governments are willing to spend $129,000 a year to keep a
kidney-failure patient alive using dialysis to clean their
blood.
According to Dr. Eliezer Be’eri, deputy director-general of
Jerusalem’s Alyn Hospital, “taking care of a child in our pediatric
rehabilitation hospital is worthwhile for society. But I can’t look at people as
numbers. It’s easy to lose our humanity. Money is not the only thing to
be considered. Our humanity is at risk. What are all our resources worth if we
are not humane?”
“A brain-damaged child will not contribute to society, but I
must take care of him because he’s a human being. I have to do it not because
society might one day benefit from him. Even though economic benefits are
important, expenses mustn’t determine if it’s ‘worthwhile’ to treat such a
child. We look at their humanity, not their usefulness. It strengthens our own
humanity.”
Be’eri was one of the speakers at Alyn’s First Conference on
Pediatric Rehabilitation, which was held recently at Jerusalem’s Crowne Plaza
Hotel and special workshop sessions at the hospital in the capital’s Kiryat
Hayovel neighborhood.
The multidisciplinary medical institution, the only
one of its kind in Israel and one of the few in the world, is directed by Dr.
Maurit Beeri (no relation to Eliezer) and treats hundreds of children and
teenagers as inpatients and outpatients. It has both regular rehabilitation and
respiratory rehabilitation departments and a medical-educational rehab
department for children as young as six months old. A rehabilitative day care
center is available for infants and toddlers up to the age of three years, while
kindergartens and a school serve children up to age 21.
Alyn’s outpatient
clinics specialize in pediatric orthopedics, treatment of spasticity, control of
elimination, wheelchairs and other devices and prenatal
counseling. Multidisciplinary clinics focus on cerebral palsy, eating
disorders, brain damage, spina bifida and spinal cord injuries, neuromuscular
disorders and breathing problems. Its staff include physicians, nurses,
physiotherapists, occupational therapists, psychologists, social workers,
clinical communications specialists and teachers.
Beeri insists on
keeping the hospital campus beautiful, with well-kept gardens and a riot of
color everywhere. “We want the children, their parents, the staff and
visitors to feel at home,” she says.
And for some, it is a home. One
seriously disabled girl named Mirale, who lived most of her childhood at the
hospital, got married, lives in the community, works as a graphic artist and
gave birth to a healthy baby.
PROF. LAWRENCE Vogel, chief of pediatrics
and medical director of the spinal cord injury program at Shriners Hospital for
Children in Chicago, was a foreign guest speaker at the Alyn conference. A
pediatrics professor at Rush Medical College and president of the American
Spinal Injury Association, he was making his first-ever visit to
Israel.
Although there is a North American network of Shriners Hospitals
for Children, established by a fraternity based on fellowship and the Masonic
principle of brotherly love, his own medical institution deals mostly with
spinal injury, plastic surgery and treating cleft palate deformities. It is not
as comprehensive as Alyn, and as he was taken on a tour by Beeri, he was very
impressed by its services, staff and scope.
“Alyn, Israel and Jerusalem
are amazing,” he said. ”Such a melting [pot] of cultures and religions. And you
see it here in the hospital as well.”
The Shriners hospital used to offer
all treatment free to its young patients, but due budgetary problems two years
ago it had to start charging health insurance companies for services. There is
also a lot of red tape involved.
“If the family can’t afford care,
however, we don’t charge. We won’t turn a needy patient away, even if he doesn’t
have health insurance.”
Fortunately, thanks to Israel’s national health
insurance and Alyn donors, the Jerusalem pediatric rehabilitation hospital’s
care is free. Alyn does not itself perform surgery; young patients are
referred to general hospitals.
Shriners does surgery in 80 percent of
cases. Its staff still see quite a lot of children with spina bifida, a
devastating neural-tube disorder whose prevalence is significantly reduced if
the mother takes enough folic acid before pregnancy.
“It seems that some
women still don’t take the pill even though it is highly recommended for women
of fertile age,” Vogel said.
His hospital, where he has worked for nearly
35 years, doesn’t have a rehabilitation center like Alyn’s.
“We treat
children with congenital disease, victims of road accidents and plenty of young
people who were victims of violence – usually guns but occasionally knives. I’m
not aware of us having victims of terror,” he said.
Shriners in Chicago
(quite a violence city compared to New York) “doesn’t have any terror attack
victims,” he told The Jerusalem Post in an interview. Since there are not many
US institutions like Vogel’s, patients come to the hospital from as far as
Texas, Louisiana and Oklahoma.
“They may come every six months and stay
for a week or so for ‘tuneups’ and checkups.”
Vogel said at the
conference that the ultimate measure of success in caring for children with
spinal injuries “is that they become adults with productive and satisfying
lives. We hope they will be healthy physically and emotionally, live
independently, have mobility and autonomy, be employed, participate fully in
their communities and pursue satisfying lives. Child development progresses in
stages, with each of them [being] preparation for the next
stage.”
Ensuring quality of life, he continued, “is the overarching goal.
It’s the same challenge for all children, not just those with special needs.
Adults have a choice and obligations, but children may not have much of a
choice; it all depends on their parents.”
Vogel noted that “there has
been a profound change in dealing with rehabilitation. It went from
fixing impairments to focusing on participation and life satisfaction. We do
things for a bigger purpose, transitioned from short-term to long-term goals.
Today, children with cerebral palsy and muscular dystrophy live much longer than
they used to, so we even have to look at aging issues. Aging starts
moment you’re conceived.”
Research by him and his Shriner colleagues has
found that the educational level among former patients is relatively high, but
they have a lower rate of marriage and much lower rate of employment than the
general population. About 80% of their patients suffer from some type of chronic
pain. Many also have other medical problems, from pressure sores to incontinence
and heart and respiratory disease, as well as emotional problems like
depression. So they need help.
A FASCINATING workshop held at the
hospital was headed by Naomi Geffen, an Alyn deputy director-general and veteran
occupational therapist who has much expertise in suiting disabled children with
motorized “vehicles.”
Incredibly, the staff can teach children who
haven’t yet reached their first birthday how to maneuver themselves about and
participate in the world instead of just staring at the ceiling or out a
window.
Geffen and fellow Alyn occupational therapist Vardit Kindler
demonstrated joysticks, switches, proximity devices that a child doesn’t even
have to touch and others that can be activated by the head or chin, sticking a
finger in a cup or even by licking. As brain development is so rapid even before
a child’s first birthday, getting them mobile is critical, they
said.
More than a dozen of different types and sizes of motorized
wheelchairs and carts that it built or purchased with money from the National
Insurance Institute are lent out to families for up to five months so the
children can practice with them at home in a natural setting. Then, when the
Health Ministry agrees to consider allocating money to help them purchase their
own motorized wheelchair or cart, the families and therapists are able to show
what the children can do.
Kids as young as three have been supplied with
mobile devices at the expense of the Health Ministry, but as money is short,
there are currently 10 severely disabled children waiting in the ministry queue
for allocations.
The occupational therapists noted that motorized
vehicles cause the disabled children to be more independent, feel more control,
participate in activities and have better motor and sensory
development.
Lack of movement leads to helplessness, passivity,
difficulty in controlling the senses and even a fear of heights.
But the
process of getting a disabled toddler to learn how to move their heads, fingers,
legs and other parts of their bodies to click a switch, move a joystick or even
lean near a sensor is very tedious and slow. Yet very rewarding. Children who
can move nothing else can use their tongue to operate a motorized wheelchair;
the devices are saliva- proof. Even a child with an IQ of 50 can learn how to
maneuver a battery-operated wheelchair or cart, they said.
Children who
were able only to look ahead can suddenly view their world 360 degrees around,
giving them a different perspective on life.
“It’s very important to
start gradually and not fail. If they do, they will be discouraged about trying
again for long time.”
Alyn staffers can program motorized vehicles to
drive relatively fast or slow depending on the age and abilities of the child.
If they jerk into action too suddenly, the child can fall. Programming also
switches the joystick from right to left or from forwards to backwards if that
is most comfortable for the young driver.
She gives as an example a
five-year-old boy from Kiryat Malachi who is transported to Alyn every
day.
“He has a heart defect and delayed development, and he’s connected
to a ventilator.
We trained him and loaned him a motorized vehicle that
he took home for the summer vacation. He came back and was so good at
maneuvering himself that his family’s application to the Health Ministry for a
wheelchair of his own was quickly accepted. He is doing wonderfully.”
The
common expression of “confined to a wheelchair” is not apt for these
children.
“The vehicles make disabled children mobile. They change their
life and their development,” concluded Geffen.