|Living Well With Cerebral Palsy
By Jane Brody
The New York Times
The phrase "it can't be done" does not seem to be a part of the vocabulary of Dr. Janice E. Brunstrom. Born 40 years ago, she was three months premature and weighed just 3 pounds. She has cerebral palsy that affects both legs.
Her parents were told she would be mentally retarded, a prospect that seemed highly unlikely when she learned to read at 4 and was further refuted when she became her high school's valedictorian.
College, medical school and advanced training in pediatrics and pediatric neurology then gave her the qualifications to establish what may well be the world's most comprehensive center for children with cerebral palsy at St. Louis Children's Hospital.
There, children with all degrees of disability, including the inability to walk, speak, see or hear, have high hopes of reaching their maximum potential.
The goal for all the children, said Dr. Jan, as she is known to her patients, is to become independent and able to make their own choices about how to live their lives.
Those who cannot speak learn how to communicate without words, usually with talking computers that can be directed by touch or eye movements.
Those who cannot walk are taught how to get around as efficiently as possible, whether by wheelchair, walker or cane.
Those with vision problems, which the St. Louis staff has linked to movement problems in most cases, can often be treated with surgery and glasses to enable their eyes to track properly.
The children's self-confidence, self-esteem and physical abilities are enhanced through classes in dance, basketball and martial arts, soon to be supplemented by tennis, volleyball and cycling. Many can reduce the amount of physical therapy they need because of the sports and other physical activities.
"Instead of having to go to the hospital and be treated with sick kids, they can go to the gym and work out with healthy kids," Dr. Jan said.
The martial arts program is perhaps the most amazing.
"No one expects someone with cerebral palsy to be good at martial arts, which require focus and motor control," Dr. Jan said. "Yet some of these children learn to take down a 6-foot-2 black belt. It really opens people's eyes to what someone with cerebral palsy can do, and it gives the kids a real sense of accomplishment."
She explained: "Having cerebral palsy doesn't mean you're not healthy; it means you can't move normally. You can have C.P. and still be really physically fit and lead the best possible life."
Dr. Jan pleads with people "not to forget the hidden potential of so many children with C.P."
"Given the chance, they can grow up to have successful careers, get married, have children and so on," said Dr. Jan, who married and has a 9-year-old son. "They can even become physicians."
Dr. Jan now takes care of about 1,500 children with cerebral palsy, her maximum, and would like to export her program.
She invites any interested doctors and institutions to visit and "learn what we do."
As she put it, "There is only one of me, but there are more than half a million people with cerebral palsy."
Last month, the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics released a report that should dispel the myths surrounding the origins of cerebral palsy, a chronic but nonprogressive disorder of movement and posture.
Though the prevailing belief is that the disease results from prolonged lack of oxygen to the baby's brain during labor and delivery, evidence from hundreds of excellent studies shows that this is the cause in at most 10 percent of cases.
In at least 70 percent, damage to the brain occurs during the pregnancy -- the result of such noxious influences on the fetal brain as maternal infections, blood clots, bleeding in the brain, intrauterine growth retardation or hormonal, metabolic or chromosomal disorders. Or, it is the result of extreme prematurity.
In other cases, the brain injury occurs after birth, from trauma to the brain incurred through car accidents, falls or abuse. And for some, cerebral palsy is the result of a combination of factors, as in the case of a child whose brain was compromised prenatally compounded by the normal stresses of labor and delivery.
For example, studies have pinpointed a rather common infection involving the chorion-amnion membranes and amniotic fluid that is rarely detected in pregnancy but that greatly increases the risk of prematurity. The inflammatory response of the fetus to this infection can sometimes damage the brain cells that control motor functions.
Only a few conditions, diseases and disorders known to cause cerebral palsy can be prevented or treated, including rubella in pregnancy, preventable by vaccinating the mother before conception; Rh incompatibility, which is avoidable by blocking antibody production in the mother; and jaundice in the newborn, treated with light therapy.
After birth and through childhood, prevention involves the consistent use of child safety seats in motor vehicles and helmets when cycling or skating.
But now, most cases cannot be prevented. Even routine fetal monitoring during labor and delivery has failed to diminish the number of babies born with cerebral palsy. In fact, the ability to rescue very premature, tiny babies has only increased the number who have some form of cerebral palsy.
Even those cases of cerebral palsy directly caused by lack of oxygen during birth, often the subject of malpractice suits with astronomical jury awards, are not preventable in most cases. They may occur because the placenta separates prematurely, the umbilical cord strangles the baby, the baby's shoulders cannot fit through the birth canal, or some other birth mishap that the doctor cannot control.
Cerebral palsy is a catchall term to describe any movement or posture disorder caused by faulty development or damage to motor areas in the brain. By definition, it is nonprogressive, though symptoms may change as a child matures. Still the disorder, diagnosed in 4,500 American children yearly, is incurable.
There are several types of cerebral palsy that result in varying degrees of disability. Spastic cerebral palsy affects 70 percent to 80 percent of patients, causing muscles to stiffen and contract permanently.
Athetoid cerebral palsy, representing about 10 percent to 20 percent of cases, results in uncontrolled writhing movements that may affect the hands, feet, arms, legs and muscles of the face.
Ataxic cerebral palsy, a rare form, affects balance and depth perception and may cause shaky movements and problems with muscle coordination. Then there are mixed forms, typically combinations of spastic and athetoid.
Some children, for example, are mildly affected with a symptom like an awkward gait that is hardly noticeable. Others may be so severely affected that they cannot operate their own wheelchairs.
Symptoms of cerebral palsy may include trouble maintaining balance and walking, involuntary movements, drooling, seizures, mental impairment, difficulty speaking, difficulty with fine motor tasks like writing and vision problems.
A third of people with cerebral palsy are of normal intelligence, though it can be a challenge to determine this in a child who cannot speak. Another third have mild mental impairments, and the remaining third are moderately or severely mentally impaired.
Once a diagnosis is made, usually by age 2, physical therapy should begin immediately to prevent contractures and atrophy of muscles that worsen the child's disability.
Parents should seek out a hospital-based treatment center and commit themselves to working at home each day with the child. Some symptoms can be reduced by drug therapy, others by surgery. Still others can be minimized by mechanical aids and biofeedback. But physical activity remains critical.