For twins Andrew and Amber, the first 15 months of life have been hard.
Born nine weeks early and weighing a bit more three pounds each, they spent their first six weeks in intensive care at Childrens Hospital in Los Angeles. The next five months, although at home, they were hooked up to monitors with alarms because their prematurity made them susceptible to heart and respiratory illnesses.
Andrew made five trips back to the hospital for treatment of pneumonia and ear infections before his first birthday. Once he even stopped breathing, setting off an alarm. His frightened mother, Susie Brideau, snatched him up from his crib and the sudden motion started him breathing again.
Although the health risks faced by premature infants like Andrew and Amber are special, they are by no means uncommon. More and more of these children, who in the past might have died shortly after birth, are surviving and leaving the hospital, but with continuing need for special care.
In the San Gabriel Valley, the only long-term program of care for such preemies is provided without charge by the Newborn Infant Follow-up Program.
Headquartered at California State University, Los Angeles, it is one of 10 regional programs established by the state in 1978 to prevent physical and developmental disabilities and child abuse in premature infants.
Babies who qualify are eligible for regular home visits from one of the 15 nurses in the program. Sharon Strosser is the nurse assigned to follow-up care for Amber and Andrew.
A key part of Strosser's job is helping parents like Brideau cope with the extraordinary emotional stress of caring for premature infants at home.
The first months of caring for the twins "was totally different from having a normal child," said Brideau, who has another son, 5. "I didn't get much sleep and I was frustrated," she said of the nights she spent anxiously expecting to be jarred from sleep by the monitor alarms.
Brideau said nothing could replace the support and information that Strosser gives her.
Almost 400 families--ranging from the poverty level to middle class--have been helped by the program during its seven years. The program is funded by a $145,000-a-year state grant, said project director Aja Lesh, a nurse practitioner and associate professor in nursing and special education at Cal State Los Angeles.
Infants admitted to the program must have a potential for normal development, Lesh said. They are selected on the basis of 15 risk factors ranging from intracranial hemorrhaging, birth weight of less than three pounds and newborn drug addiction, to home environments that fail to stimulate normal psychological and physical development.
Program nurses visit delivery rooms of San Gabriel Valley hospitals to identify high-risk infants eligible for the program. Nurses then go into their homes over a two-year period to do physical and psychological examinations of the infants while assessing such things as the child's diet and the home environment for health risks.
Gilbert Martin, head neonatalogist at West Covina's Queen of the Valley Hospital, said the program's nurses not only make life-saving detections of illnesses, but also provide the best information about an infant's health because of their weekly, and sometimes daily, home visits.
Martin added that "the success (of hospital care for premature infants) depends not only on the ability to cure acute illness, but whether or not the infant will be able to function normally in the home."
Lesh said giant strides in medical care have increased the life expectancy of premature infants. But she said that the advancements also increase the likelihood these infants will survive with a range of psychological and congenital abnormalities.
The increased risks of prematurity are reflected in national studies which show that these infants are twice as likely as full-term infants to die of sudden infant death syndrome during the first year of life.
Moreover, Lesh cited studies showing that 40% of premature infants have difficulty gaining weight; and more than 20% of infants born weighing less than two pounds fall short of normal mental development.
A national study in 1945 reported that only 4% of infants born weighing less than two pounds survived. But by 1978 the survival rate for such infants had risen to 80%, Lesh said.
No figures for premature births were available for the San Gabriel Valley, Lesh said. But county health department statistics show that in 1982, 6.3% of the infants born in the county--about 8,750 of the 138,888--weighed less than five pounds. One-third of the preemies born in California are born in Los Angeles County, according to the County Department of Health Services.
But statistics tell parents little about how their premature infant will differ from normal, full-term babies.
Premature infants may take two years to make up the growth they missed in the womb, and Lesh said these children are more likely to experience inadequate parenting. In part, she blamed prolonged hospital stays that often separate mother from infant and can interfere with the emotional bonding process that helps the infant thrive and that builds the mother's confidence as a parent.
Family stress is heightened when the infant's behavior does not meet parental expectations.
Besides irregular sleep cycles that can rob parents of rest, Martin said premature infants tend to be irritable and reject human touch because months of hospitalization have taught them to associate physical contact with startling intrusions followed by pain. Moreover, Lesh said, if stresses caused by the infant among family members are not mitigated early, child abuse or neglect may follow.
But despite Brideau's difficulties in raising her twins, Strosser said the young mother has done an exceptional job.
Brideau said the experiences she had with Andrew and Amber were "nerve-racking" because the babies demanded round-the-clock attention.
"Their medications had all kinds of side effects," said Brideau, 26, who is separated from her husband and subsisting on welfare.
"If I left them with anyone, they had to know infant CPR (cardiopulmonary resuscitation)." She said she rarely finds baby sitters.
Brideau, whose medical expenses are covered Medi-Cal, said her children still require special care. Andrew, thin-boned and pale for a 1-year-old, does not walk yet and still is vulnerable to pulmonary illness. Amber, a bit healthier than her brother and walking, is nonetheless anemic. But doctors say the chances increase every day that the twins will enjoy good health as they mature.
Strosser said a dramatic example of the program's potentially life-saving services occurred last year during a routine physical examination of Andrew. Another program nurse checked his dosage of heart medication after she noticed that Andrew's heart rate was dangerously high.
She discovered that Andrew was receiving twice the required dosage of a heart medicine because two doctors had each prescribed the same medication with knowing the other had already done it, Strosser said.
Strosser, who said she encourages clients like Brideau to call her at home in emergencies, said she will continue to monitor the twins every three months for one more year.
"Mothers worry about everything as a potential problem," said Strosser. "But Susie knows exactly what's going on. She keeps them on their medications. She watches them very closely."
Brideau returned Strosser's compliment. "She is my friend," Brideau said. "She answers my questions. I want to know everything I can possibly know so they (the twins) can live a normal life."