Rory Clark still gets goose bumps talking about a moment two years ago when he heard the news: His daughter Jennifer, a premature baby with respiratory disease syndrome (RDS), had been chosen for a new treatment with a rare and experimental substance. Doctors "were literally drawing names out of a box," Clark said. Then one came "waving a card saying 'She's going to get it! She's going to get it!' "
"It" was human surfactant--a complex aggregate of proteins and lipids (mostly fats) found in the amniotic fluid of mature fetuses. Victims of RDS (also known as hyaline membrane disease) lack the sticky, soaplike substance, which in full-term infants has prepared the lungs for birth by lubricating them and keeping fluids out.
Rory and his wife, Karen, had been visiting her mother in Escondido when Karen went into labor two months prematurely. Palomar Memorial Hospital sent them to the UC San Diego Medical Center, where Jennifer was born.
Little Hope for Survival
She weighed less than 3 pounds; her delicate lungs had collapsed and were filling with fluid. No one had given the parents any hope that their first child would survive.
Doctors had explained to the Clarks that Jennifer had a severe case of RDS, which afflicts the youngest and smallest 15% of the 380,000 premature infants born in the United States every year--including the three Frustaci septuplets who died at Childrens Hospital of Orange County in recent weeks.
To help Jennifer live, UCSD specialists had started with what has become standard treatment for RDS--hand-pumping oxygen into her lungs and attaching her to a sophisticated mechanical ventilator.
But they had also told the Clarks their daughter could be helped to breathe on her own by an emerging therapy available through the center's randomized research project. In the treatment--first used on infants in 1981--doctors use surfactant from the amniotic sacs of healthy, full-term babies, dripping the substance down the windpipes of sick premature babies in the first few hours after birth.
Not Widely Accepted
Champions of surfactant treatment--which is not yet widely accepted--say it instantly increases an infant's oxygen intake by as much as 10 times and reduces the need for artificial ventilation.
The treatment was an instant success, Rory said. After receiving the surfactant, Jennifer "immediately started breathing on her own," he said. After a single treatment hours after birth, she remained in the hospital for two months--returning periodically to the mechanical ventilators--and was then released.
Today the only reminders of her early brush with death are scars and lumps on her hands and feet where she received blood transfusions for her low blood pressure. The strawberry blond toddler, who alternates between seriously scrutinizing the world and reacting joyously to it, is "happy and healthy because she has no (medical) problem," according to Dr. T. Allen Merritt, associate professor of pediatrics at UC San Diego Medical Center, who administered the surfactant to Jennifer and monitors her development every six months as part of the ongoing project. "Her development has always been normal," he added.
Now under intense study at a handful of hospitals, surfactant therapy is one of the latest in recent advances--including medication, monitoring equipment and surgical techniques--aimed at saving younger and smaller infants.
Still many, including Donald McNellis of the National Institutes of Health and doctors at the Childrens Hospital of Orange County, believe the jury is still out on surfactant. "We don't have enough data on its effectiveness and safety," said McNellis, who is special assistant for obstetrics in the pregnancy and perinatology branch of the National Institute of Child Health and Human Development.
"It's a very exciting approach, and it will probably be effective in the most severe cases."
The Clarks, however, are enthusiastic proponents of surfactant therapy, and credit it for their daughter's survival and healthy recovery. In particular, they note, it allowed her to avoid prolonged dependence on the mechanical ventilator.
Though there is disagreement among neonatalogists, some researchers say the use of mechanical ventilators is associated with a high incidence of lung injury. Among them are Merritt and Louis Gluck, director of neonatal/perinatal medicine at UC Irvine Medical Center and founder of the first neonatalogy unit at Yale University in 1960. "Although some infants are able to have excellent recovery after assisted ventilation, a 20-year experience now indicates that perhaps one-third of all infants ventilated for RDS develop a debilitating chronic lung disease--bronchopulmonary dysplasia," Merritt said. The disease can be fatal within the first year; it is also associated with lower (physical) development scores and recurrent infections in the lung, he said.