Doctor Hears the Pain : Physician Recalls Her Own Pain to Inspire Children With Spina Bifida
When Dr. Sharon Kawai was born with a defective spine 45 years ago, the doctors told her mother that the infant was “a freak of nature” who should be left in the hospital to die quickly rather than face a short and horrible life.
Today, after successfully battling the odds and enduring 50 surgeries, the petite blond mother of three children directs the physical rehabilitation program at St. Jude Medical Center in Fullerton.
Kawai, nicknamed “Andretti” by those who marvel at how quickly and adeptly she spins around the hospital in her wheelchair, wows and inspires the parents of handicapped children to whom she frequently speaks.
The victim of spina bifida decided when she was four to become a doctor. She bitterly remembers that was when a physician performed abdominal surgery on her without anesthesia because he mistakenly believed she had no feeling in her stomach and disregarded her cries. “It made me want to listen to people when it hurts and want to be nurturing and comforting,” she said. “In my own pain it made me want to reach out to others in pain.”
No one is more pleased than she about the medical community’s change in attitude toward children with spina bifida, in which babies are born with defects in their spinal columns.
Spina bifida is little known by the public, medical experts say, although it affects 4.6 of each 10,000 infants born each year in the United States, according to the national Centers for Disease Control and Prevention. An additional unknown number of fetuses diagnosed with the disease are aborted each year, the center reports.
But effective antibiotics and surgical and diagnostic techniques developed since World War II have greatly improved the survival rate of children with spina bifida, say medical experts, by helping them overcome such complications as fluid build-up on the brain and life-threatening kidney infections.
“The prognosis is that they can live a normal life span if they are treated properly,” said Dr. Sam Rosenfeld, an orthopedic surgeon in Orange who has fought to get spina bifida children the care he believes they deserve.
It was in large part through Rosenfeld’s persistence, his associates say, that late last January a spina bifida clinic was established at Children’s Hospital of Orange County, which had been the only large county in the state without such a facility.
Rosenfeld said he also wants to promote public awareness that women of childbearing age could significantly reduce the incidence of this extremely burdensome and disabling birth defect by improving their diets.
The Centers for Disease Control and Prevention, after reviewing international studies, recently concluded that about half of neural tube birth defects, including spina bifida, could be prevented if prospective mothers daily consumed 0.4 milligrams of folic acid, which is naturally found in deep green leafy vegetables, citrus fruit and whole grains.
The U.S. Food and Drug Administration, realizing that about half of all pregnancies are unplanned, is proposing to fortify with folic acid all cereal grains that are used in the manufacture of such common food staples as bread, breakfast cereals and pasta.
To streamline care, two afternoons each month, the spina bifida clinic at CHOC brings together at the hospital in Orange a team of specialists to treat the complex disorder. Patients can be seen by a neurosurgeon, orthopedist, urologist, geneticist, nutritionist, nurses, physical therapist, social worker and experts in fitting youngsters with braces and walkers.
“It took three years of banging on doors,” said Rosenfeld, noting that hospital administrators were concerned about the cost of starting such a clinic in difficult economic times.
A similar spina bifida clinic at UCI Medical Center in Orange disbanded in 1985 after 15 years because of economic problems, said UCI spokesperson Fran Tardiff.
Until the CHOC program began this year, Orange County “was the only large county in the state without a spina bifida clinic. It was sorely needed,” said Linda Boyd, county program manager for California Childrens Services.
Dr. Benjamin Silverman, the clinic’s director, said the clinic already has nearly 50 children enrolled, ranging from infants to adolescents, and a waiting list of new patients extends through October.
He said the clinic team makes sure no aspect of a child’s health is overlooked which could worsen and require surgery.
“Because these poor children have no sensation (in their legs), some have had fractured bones and were unaware of it,” Silverman said.
Doris Hopp of Yorba Linda, the mother of year-old twin boys, one of whom has spina bifida, said taking a baby home from the hospital with such a disability can be “overwhelming” and she is glad for the advice of other mothers who belong to a spina bifida support group that meets at CHOC.
Last week, after her son Spencer had surgery to correct a dislocated hip common to spina bifida, she was counting on a support group member to show her how to diaper a baby in a full body cast.
Kawai said, by contrast, that she and her parents had to meet each new challenge alone.
“My parents never had other parents to talk to and I never had spina bifida kids to speak to,” she said.
In growing up, she was not discouraged by chronic spinal pain she suffered or by boards of education that determined she could not attend school because she could not control her bladder and was confined to a wheelchair. She said public educators also assumed she was retarded.
However, a first-grade teacher in Columbus, Ohio, where Kawai lived, tested her and found she had an above-average IQ. Subsequently, the teacher instructed the young girl at home how to read and write.
It was an isolated childhood, she said, in which Buckeye, a lap-size black and white female mutt “was my only friend.”
Finally Kawai was admitted to a public school in seventh grade on probation. After her first year she did so well, reaping A’s and honors in her struggle to prove herself, that the school started admitting other handicapped children, she recalled.
After graduating from high school, she majored in microbiology at Ohio State University, graduating summa cum laude, and was admitted to the Medical College of Pennsylvania.
“I was the first student in a wheelchair they had ever accepted.”
Kawai married a Japanese immigrant who is a financial consultant and, despite warnings from doctors that she couldn’t have children, she has given birth to two and adopted another, ranging in age from 7 to 16.
Kawai said she frequently accepts requests to do public speaking, hoping that children with handicaps like spina bifida will look to her as a role model.
“When I was a child I felt shy and apologetic for my disability,” she said. “When I was playing in the front yard at home, if I heard a car coming, I would dash to the back yard so people would not have to look at me. I didn’t want to make anybody sad by seeing a kid in a wheelchair.
“Now I am not holding back. I realize we are all different and unique and it is our diversity that makes us beautiful. Now I can accept all of me.”
Spinal Disease
About 8,000 babies are born in the United States each year with spina bifida. In 1991, the most recent year for which information is available, seven of the 51,305 babies born in Orange County suffered from spina bifida.
* Name: Spina bifida (pronounced SPY-nuh BIF-uh-duh)
* Description: An incurable spinal column birth defect that can cause paralysis, hip dislocation, water on the brain, loss of bladder and bowel control, and urinary tract infections that can lead to kidney failure
* Mortality rate: About 50% before adulthood if not treated
* Incidence: 4.6 of 10,000 live births
* Cause: Genetic predisposition and a deficiency in the mother’s diet of folic acid, most commonly found in citrus fruit, leafy green vegetables and whole grains.
* Treatment: Surgical closure of lesions in the spine, shunts to drain fluid from the brain, catheterization of the bladder, orthopedic surgery, and appliances such as braces and wheelchairs
Sources: national Centers for Disease Control and Prevention; Children’s Hospital of Orange County
Los Angeles Times
