COLUMN ONE : Low Birth Weight’s High Cost : Many of these babies suffer health and behavior problems. The emotional and financial toll on families--and society-- is enormous. Often, the problem is preventable.
Naaman Poingsett turns 8 today. He is a talkative second-grader with Disneyland on his mind. He bowls, has a B average in school and knows every aircraft at Los Angeles International Airport. His health is good. But his parents remain on guard.
After all, they waited 13 years for Naaman. His mother, Katie, had four miscarriages before he was conceived. Then he arrived 12 weeks early, weighing 2 pounds, 11 ounces, and spent four months in a Los Angeles hospital. To take him home, the Poingsetts had to learn cardiopulmonary resuscitation.
Naaman was rehospitalized almost immediately. Later, he needed eyeglasses to correct damage done in neonatal intensive care. He developed asthma at 1. There were calls from preschool teachers: Mrs. Poingsett, your son is not breathing right.
These days, Carl and Katie Poingsett still keep a close eye on Naaman. On their daily rounds as letter carriers for the Postal Service, they carry beepers and rely on an elaborate set of codes for communicating news about Naaman, should anything come up.
“Even now, we watch him,” said Carl, a big man ensconced in a small house on the edge of Watts, admiring his son across the room. “He’s precious to us. I guess we’ll always watch him.”
Forty thousand babies die every year in the United States, many of them as a result of being born severely underweight. That rate, among the worst in the developed world, has been condemned by health experts as a preventable tragedy and a national disgrace.
Many more pull through, such as Naaman, with the help of medical technology. What becomes of those low-birth-weight babies who survive? Many do not do as well as Naaman, but their plight is often eclipsed by those who die.
At least half go on to lead normal lives. But as many as 1 in 5 born as small as Naaman end up with a major disability, such as cerebral palsy. Others have lesser handicaps, such as low IQ, or one or more of a wide range of health and behavior problems.
Respiratory problems bedevil many--a consequence of weeks on a ventilator. Some have vision problems, in part from high doses of oxygen. Some are plagued by small illnesses, others have difficulty concentrating. Some have trouble in school, repeating grades.
Much of that suffering could be prevented, experts say: A third of all underweight births could be averted if the country addressed the medical, social and economic conditions underlying the disproportionately high U.S. rates of low birth weight and infant death.
Even after birth, some consequences of low birth weight could be minimized through early educational and family support. Access to appropriate programs is inadequate, especially for poor children, who are the most vulnerable to the long-term risks of being born underweight.
So, thousands of infants each year embark upon life at a disadvantage. Families are disrupted, social services are taxed. Public and private health insurers, such as Medicaid, end up paying as much as $250,000 for a single baby’s hospital costs.
“Our priorities are all whacked out,” said Dr. Joseph Warshaw, a professor of pediatrics at Yale School of Medicine. “Here we are, spending all this money in acute-care costs, and we really can’t develop the support base to help people out of poverty.”
Furthermore, said Dr. Richard E. Behrman, director of the Center for the Future of Children in Los Gatos, “there is cost to the system and to society in that we have just that many fewer people who are functioning at their best and who can be productive citizens.”
Daniel Stoner’s odds were 50-50. Born 10 weeks early, he could have lived or died, but he pulled through. After two months in the hospital, he headed home weighing 4 1/2 pounds and looking to his mother like a plucked chicken.
Daniel’s troubles, as it turned out, had just begun. He did not walk until he was 18 months old. He seemed unready for kindergarten, then did poorly on state aptitude tests. Last month, his parents learned that Daniel, now 5, is mildly mentally retarded.
Daniel is in occupational therapy in school. He is working on balance and coordination. He is also in speech therapy. For the time being, the Stoners and the school have decided against putting him in special education.
“Right now, I’m very concerned with his future,” said his 29-year-old mother, Clara, now living in Oregon City, Ore., with her husband and two younger children. “From what these people are telling me, this is going to be a lifelong struggle.”
Jonathan Choice was born weighing just over three pounds. He spent his first month in a hospital. He was wearing eyeglasses by his first birthday, then had eye surgery at 1. Now, five years later, his mother says one eye is causing him trouble again.
Jonathan also has mild cerebral palsy, a movement disorder common in children born prematurely. As a result, he had surgery on both legs before he was 2. For six weeks, he wore casts from his feet to his hips. He was wearing them when he learned to walk.
Jonathan’s school experiences have not been easy, either. His kindergarten teacher considered holding him back. He did not seem to be picking up what she was saying, the teacher said. In the end, Jonathan ended up graduating with his class.
“He’s doing pretty good in first grade,” Betty Parker, Jonathan’s mother, said recently, sitting with her son in her lap in the dining room of their apartment in Colton. “But the other day, he said school is getting boring.”
About 1 in 14 U.S. babies is born weighing under 5.5 pounds. One in 100 weighs under 3.3 pounds. Those rates of low birth weight and so-called very low birth weight are rising in many cities, including Los Angeles. They are especially high among the poor and among blacks.
Low birth weight is an indicator of inadequate fetal growth, either because of premature birth or growth retardation in the womb. It is often impossible to pinpoint a cause, but many factors can put a woman at risk of having a low-birth-weight child.
Women under 17 and over 34 are at high risk. So are poor, unmarried and uneducated women. So are women with hypertension, anemia, infections or poor nutrition, women who smoke or use drugs, women under stress and women who get inadequate prenatal care.
None of the women interviewed for this article are certain why they delivered early. Their doctors could only speculate. Katie Poingsett may have developed an infection; Betty Parker may have experienced physical stress while pulling up roses in her mother’s garden.
Clara Stoner’s doctor toyed with three possibilities: She had been moving furniture a week before she went into labor; two months earlier, she said, her boss had pointed a gun at her during an office incident, and there had been evidence of an infection in her amniotic fluid.
The relatively high rate of underweight births in the United States is the major reason why the country’s infant death rate is among the worst in the developed world: Underweight babies are 40 times more likely than others to die in the first four weeks of life.
The link between low birth weight and other health problems is less clear-cut. Studies suggest that 10% to 20% of babies born weighing under 3.5 pounds end up with a major disability. That is two to four times the rate among babies born at normal birth weight.
The smaller and earlier the infant is born, the greater the risk.
Some of those disabilities result from the same technology that keeps premature infants alive. Prolonged use of a respirator can produce chronic lung disease, high doses of oxygen can help damage the eyes, and noise and drugs may contribute to hearing loss.
A common cause of neurological problems is so-called intraventricular hemorrhage, in which fragile blood vessels rupture and bleed into the brain. More than a third of low-birth-weight infants are believed to have brain bleeds, though most do no permanent damage.
Less well understood are the moderate learning deficits and behavior problems increasingly being seen in some low-birth-weight children as they begin school. Some may be traceable to mild hearing loss and vision problems, perhaps combined with the effects of poverty.
In a 1989 study of low-birth-weight children entering school, Dr. Marie McCormick of Harvard Medical School found that the children’s IQs were in the normal range but slightly lower than those of children born larger. Their school failure rate was “fairly high,” she said.
Dr. Leila Beckwith, a pediatrics professor at UCLA, has been tracking a group of children who weighed no more than 3.3 pounds at birth and who are now entering school. In her group, approximately 20% have major disabilities and another 30% have less severe problems, she said.
One pattern of behavior Beckwith has noticed is a kind of passivity. She described some of the children as “followers"--not socially isolated but “on the fringes,” possibly reflecting subtle but deep-seated attitudes about themselves.
“Their parents consider them fragile and vulnerable, and I think the children experience that indirectly from their parents and directly from themselves,” she said. “That doesn’t make one feel assertive and confident. I think there’s an impairment of self-confidence.”
“In the long term, the majority will do well,” said Dr. Annabel J. Teberg, professor emeritus of pediatrics and family medicine at the USC School of Medicine. "(But) it is not always easy to get there.”
Sherry Rodgers woke up in a pool of water on Thanksgiving morning, 1983. It was the water bed, her husband, Robin, suggested. When they went into the bathroom and realized that Sherry’s water had broken three months early, Robin threw up in the bathtub.
Adam Rodgers weighed 3 pounds, 1 1/2 ounces at birth. He was put on a respirator because he could not breathe. He spent eight weeks in the hospital, at a cost of $110,000. When he came home, the Rodgerses say, he cried 24 hours a day.
Until he was 1 1/2, Adam was on medication for apnea, a periodic stoppage of breathing. As soon as he came off it, he developed asthma. He would choke on anything--a quarter of a Cheerio, the corner of a paper towel. He could not eat an unpeeled apple until 3 or 4.
When Adam got chickenpox at 3, it was the worst case his doctor had seen. As Sherry and Robin remember it, Adam was awake for 40 straight hours, delirious, insisting that Robin was in the living room digging holes in the couch.
“We wanted to kill each other,” Sherry Rodgers remembers of her marriage during the early days with Adam, now a healthy 7-year-old in first grade in Palmdale. “I’m surprised we didn’t get a divorce.”
The personal and financial costs of a low-birth-weight baby can be enormous, particularly early in the child’s life. In many cases, those costs fall to young families with limited resources and many competing needs.
Hospital costs are exorbitant. In a study of urban hospitals with neonatal intensive care units, researcher Rachel Schwartz found that low-birth-weight babies accounted for 9% of the neonatal patient load but 57% of the total cost of neonatal care.
McCormick, of Harvard, found that about 40% of infants born under 3.3 pounds are hospitalized at least twice in the first year. Small babies see doctors more often than do other babies. Then there can be expenses for therapy, preschool and special education.
Schwartz concluded that $73 million to $96 million could be saved annually if just 20% of infants were born weighing just a half-pound more. For every dollar society might spend to reduce the number of underweight births, $3 in medical-care costs could be saved, researchers say.
“Each developmental delay has a cost to it, both in human and economic terms,” said Carol Korenbrot of the Institute for Health Policy Studies at UC San Francisco. “It has an enormous economic cost to it, and it can haunt babies throughout their life.”
Deborah and Chris Merlin had met in an aerobics class in Santa Monica. They were married 32 days after their first date. She became pregnant almost immediately, had a difficult pregnancy and ended up delivering twin boys at just 30 weeks.
Erik, born at 3 pounds, 2 ounces, did well. He was at home within six weeks and was walking at 1. But Westley, two ounces heavier, developed respiratory distress syndrome and was on a respirator for one month, then on oxygen for another 2 1/2 months.
Westley came home at four months, weighing just 7 1/2 pounds. He was so weak, it would take hours to feed him two ounces of milk. He seemed withdrawn, in pain and physically rigid. He would sit in his swing, sucking on a pacifier and avoiding eye contact.
“When I went to hold Westley, he would cry,” recalled Merlin, who had to return to full-time work. “And Erik was so wonderful as a baby. . . . Erik would demand me, where Westley didn’t want me. And when you have twins, it’s easy to take the easy way out.”
She felt guilty, she says, that she did not like her own child.
After Westley’s fourth rehospitalization, the Merlins hired a nurse who specialized in high-risk infant care. She began working with Westley--exercising his limbs, giving him physical therapy and distracting and comforting him when he cried in pain.
Within 10 days, Merlin recalls, Westley was crying to be held.
“It changed my relationship with him,” said Merlin. “I think about what could have happened if (the nurse) hadn’t taken over the case. I really believe she helped him catch up by several months.
“Westley was definitely developing a behavior problem because he wasn’t bonding with me, with people,” Merlin said. “He was developing social problems, social retardation. Then he came out of his shell. People are drawn to him now.”
Merlin and others believe that many parents, physicians and health officials fail to recognize the importance of early medical, educational and family support in maximizing the potential--and improving the lives--of babies born underweight.
Earlier this year, in a pioneering study of 985 premature, low-birth-weight babies, researchers found that a program of early intervention could add an average of 13 points to a child’s IQ and could cut the risk of behavioral problems in half.
The program used in the study involved regular pediatric care and monitoring as well as weekly and biweekly home visits from a trained professional, weekday attendance at a child-development center and support-group meetings for parents.
Under federal law, states can apply for federal funding to set up programs such as ones to prepare high-risk children for school. But even professionals find it difficult to find programs for all eligible children.
“I would estimate that at least 50% of the children that we try to enroll are put on waiting lists and either don’t get in or are on the lists for at least a year,” said Karen Finello, a developmental psychologist who runs a program for high-risk infants born at Los Angeles County-USC Medical Center.
“We invest millions and millions of dollars to find out what increases the chance of better outcomes,” said Dr. Jack P. Shonkoff, professor of pediatrics at the University of Massachusetts Medical School. “And after spending the money to learn some of the answers, we don’t use that knowledge. What was the point of doing those studies?”