‘Preemies,’ Their Parents Get Extra Help

For twins Andrew and Amber, the first 15 months of life have been hard.

Born nine weeks early and weighing a bit more than 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 stopped breathing, setting off an alarm. His mother, Susie Brideau, snatched him up from his crib and the sudden motion started him breathing again.

Need for Special Care

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.

One 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 for 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.

Emotional Stress

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.

15 Risk Factors

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.

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.

National Studies

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.

She said county Department of Health Services 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. In addition, one-third of the preemies born in California are born in Los Angeles County.

Problems of Parenting

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.

Round-the-Clock Care

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.

Monitoring to Continue

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.”