Wednesday, August 08, 2007


First published in The Jakarta Post, August 8, 2007


Alpha Amirrachman, Contributor, Jakarta

Dina (an alias) experienced difficulties when delivering her first baby at a hospital in her hometown.

As the baby would not come out, the attending doctor decided to use a vacuum to extract it.

However, the umbilical cord had become wrapped around the baby's neck in her uterus, and during the procedure his oxygen supply was cut off. When the baby was finally born, he didn't cry and his body was convulsing. He had gone into a coma from oxygen deprivation and needed to be placed in intensive care for a month following birth.

Later, it was found that his brain had been infected with cytomegalovirus, a type of herpes virus that Dina might have contracted during pregnancy.

Now 4.5 years old, Rangga (alias) has quadriplegic cerebral palsy. Dina diligently brings her son for therapy at Keanna, a private rehabilitation center in Cilandak, South Jakarta.
His prognosis is not good, as he cannot move any part of his body, not even his eyes.

But Dina is an optimist. "There is progress," she told The Jakarta Post, adding that she was ecstatic when Rangga finally smiled for the first time at her touch.

Cerebral palsy (CP) is a physical disorder resulting from non-genetic factors that cause brain damage, such as oxygen deprivation, infection and physical trauma, during or after pregnancy.

"The brain damage itself is non-progressive, but it can cause physical disorders," said pediatric neurologist Dr. Irawan Mangunatmadja of Cipto Mangunkusumo General Hospital in North Jakarta.

"It is a persistent, but not unchanging, disorder of movement and posture appearing in the early years of life," he said.

Several viruses can cause in utero brain damage such as TORCH, which stands for toxoplasma, rubella, cytomegalovirus (CMV) and herpes simplex virus II (HSV-II).

Toxoplasma is a genus of parasitic protozoa whose best host are cats; however, the vast majority of warm-blooded animals can carry it. The disease it causes, toxoplasmosis, can have fatal effects on a fetus during pregnancy.

The rubella virus causes rubella, or German measles. The virus is hard to detect, as it usually exhibits only mild symptoms or is asymptomatic.

Cytomegalovirus (CMV) is an ordinary virus and hardly ever causes noticeable disease, but it belongs to the herpes family, while HSV-II causes excruciating sores on the anus or genitals and may be dormant in nerve tissues.

Oxygen deprivation and a lack of nutrition channeled from the placenta to the fetus are also cited as possible causes of brain damage in the uterus; these also can cause low birth weight, viral encephalitis, brain tumors, head injuries and meningitis after birth.

"Generally, cerebral palsy can be categorized by the tonus, or muscle rigidity, and areas of the affected body," said Irawan.

CP is mainly classified according to tonus into three types: spastic CP, athetoid CP and ataxic CP.

Spastic CP is regarded as the most common form, wherein the cerebral cortex -- the region of the brain that controls thought movement and sensation -- is damaged. In such cases, the arms are usually hang lifeless, and the hands are twisted against the forearm. Its effects on the legs can be noticed by the way the child walks, depending on the degree of severity.

Athetoid CP results in involuntary, uncontrolled and uncoordinated movements of the muscles, due to damage of the basal ganglion. Consequently, all limbs display jerky movements while the fingers and wrists are twisted. Due to poor coordination, the child might also stumble when walking.

Ataxic CP is the rarest of the three and results from damage to the cerebellum, which controls stability. A child with this type of CP will have difficulties with balance.

According to the affected areas of the body, CP is classified into hemiplegic CP, diplegic CP and quadriplegic CP.

Hemiplegic CP describes the condition when half of the body -- such as the right arm and right leg, or the left arm and left leg -- is affected. Almost all children with this form CP are able to walk, since spasticity mostly affects the arm.

Diplegic CP is indicated by the more severely affected lower limbs, which is commonly found in babies born prematurely, while in quadriplegic CP, all four limbs are severely affected.

Technology can help detect the degree of brain disorder through the computerized tomography (CT) scan or magnetic resonance imaging (MRI).

The position emission tomography (PET) scan is used to identify any specific chemicals in the brain while the electroencephalogram (EEG) can also be useful in detecting brain disorders.

Children with CP are found in both developed and developing countries. In the 1970s and '80s, the number of children born with CP in developed countries declined, but appeared to rise after this period.

In the United States, CP occurs in 1.5 to four children per 1,000 live births; in Indonesia, about 2 percent of babies are born with delayed development, including cerebral palsy.

Various forms of rehabilitation can be helpful to children with CP, such as physical therapy, a standing frame to reduce spasticity, or the Bobath Concept to help the child physiologically through play to improve posture and reduce stiffness.

Aside from private rehabilitation centers in Jakarta, many hospitals, like Cipto Mangunkusumo General Hospital, Fatmawati General Hospital and Harapan Kita Hospital, have rehabilitation and treatment wards for children with delayed development.

"But parents cannot depend merely on treatment here," said therapist Retno of Cipto Mangunkusumo. "We (also) give them exercises to be done at home."

While the child is encouraged to learn some skills, therapy is administered in stages.

"First, we have to relax their muscle rigidity through exercises before giving them functional exercises," said therapist Ahmad Syakib of Fatmawati hospital.

For example, he said, one patient with athetoid CP required exercises for coordination to treat involuntary movement.

"What we can do is to encourage them to be as independent as possible, since CP has no cure," said Ahmad.

As cerebral palsy is non-genetic, women with CP can still have healthy babies, and Ahmad gave as examples two adult female patients with CP who have normal and healthy children.

Nevertheless, some factors still hamper the proper treatment and handling of children with CP.

Irawan lamented that many parents appeared to have a low awareness of the condition, and when they notice that their children have some kind of delayed development, they preferred to adopt "alternative" treatments -- until it was too late for a professionally designated rehabilitation program.

He added that the parents' financial situation could adversely impact CP therapy, and supporting public facilities remained almost nonexistent in Indonesia.

"What is also important is their chance to go to school, to have an education," added therapist
Novi of Cipto Mangunkusumo hospital.

Children with cerebral palsy have various degrees of learning problems; the most common are visual impairment, hearing impairment and difficulties with speech and language. Some are good at mathematics and reading, but poor at perceiving shapes.

The average intelligence quotient of a child with CP is 100, with many registering in the 70-80 IQ range.

But those with an IQ of 119 or above are usually able to excel in school, said psychologist Annie L. Perbowo of Harapan Kita hospital and the Pela 9 rehabilitation center.

The government has campaigned for sekolah inklusi (inclusive school), under which normal schools are to accept children with special needs. In 2003, 21 schools -- from kindergarten to high school, including vocational high schools -- across the five Jakarta districts participated in the program.

The campaign, however, is yet to be followed by concrete support from the government.

For example, the Post observed that a state elementary school in Bangka, South Jakarta, that accepts around five children with special needs every school year is not yet equipped with supporting facilities such as a special ramp and toilet. The school also has to arrange a special education teacher on its own.

It appears that no minimal standardization of school infrastructure and teaching staff exists for special needs children, such as those with cerebral palsy.

Further, several teachers at different schools did not have any understanding of cerebral palsy, merely grouping CP children among others with mental retardation or hearing and visual impairment.

No comments: