Babies Get Fighting Chance at Life in Schulzes’ House

A strange watery gurgle follows you everywhere in Kay Schulz’s house, as though some creature from the depths of the sea has moved into her Clairemont tract home. Schulz hears it all night, too. When the gurgle becomes thicker, it wakes her and she rushes to the bedrooms of her infant foster children who are belted to oxygen tanks and monitors. From small holes in their throats she suctions out secretions that threaten to clog their synthetic tracheas and suffocate them by cutting off their only source of air.

The gurgle comes from an intercom that carries the children’s rhythmic breathing through the house, and that ties Kay, 53, and her husband John Schulz, 63, to children so sick that their doctors usually predict they will not live.

These are children who until recently would have died at birth--children that new and sophisticated medical technology has spared from death but delivered into a world just learning to cope with the demands of their survival. They suffer from a host of extraordinary disabilities: pulmonary diseases, a variety of muscular dystrophies, cerebral palsy, hydrocephalus, spina bifida and apnea. The medical terms mean they cannot sit up or move their heads, cannot speak, cannot control their muscles from spasmodic shuddering, cannot breath on their own and sometimes just stop breathing altogether.

“But they’re alive,” says Schulz. She says she has been foster mother to 124 children since 1959, among them 40 premature infants she nursed to normalcy, at times feeding them with an eyedropper. In 1981, when a social worker asked if they would be willing to take a four-pound Hispanic infant with hydrocephalus, cerebral palsy and a colostomy, she and her husband began caring for extremely medically handicapped children.

“I just didn’t see why not; the medical aspects didn’t frighten me,” said Schulz, as reflective as she manages to get about spending her life keeping small children alive with machines, medicine and love. She currently has four foster children, three of whom need constant medical attention.

Her second husband, John, who knew when he married Kay in 1979 that she took in kids the way some people take in stray cats, is just as matter-of-fact when asked if he minds spending his near-retirement nursing and nurturing chronically sick children.

“I get a lot out of the children,” the cost engineer responded simply, as though it should be obvious. “I guess the bottom line is that you feel really needed.”

He is. A look of panic spreads over the handsome, ebony face of his 2-year-old foster son when, in the midst of playing, the small hole in his throat that lets him breathe begins to fill with mucus. The toddler, who was born three months premature with a defective trachea, runs into John’s arms for him to clear out the plastic tube into the boy’s trachea with one of the suction devices around their house.

“We know they know their every breath depends on us,” said Kay, a former pediatric secretary whose two grown children were raised alongside foster children.

The toddler, undaunted by the threat of suffocation that he faces day and night, returned to play with a devilish look on his face. He climbed over John as he relaxed in an easy chair, after a forbidden fountain pen in his shirt pocket.

The boy communicates with big, round eyes that shine like searchlights and with sign language he has been taught by the Schulzes and education specialists who visit weekly. They say he would have been a gifted child had he not had to fight for his life. A speaking device has been fitted to his breathing hole; he is being taught to speak through a reconstructed trachea surgeons fashioned with cartilage from his eighth rib, Schulz said. He has already undergone surgery six times in his short life.

It is hard to comprehend this little boy’s physical hurdles when you see him giggle soundlessly after completing a back flip off the couch. Although he is small for his age, it is hard to believe that he was so malnourished as an infant that he fit in a shoe box.

“Wherever I go, people look at him and ask, ‘Where can I get one of those?’ ” Kay says, laughing.

Subject of a Modern Debate

Medical and moral debates whirl around the issue of where to draw the line in saving the lives of such children, most worse off than this toddler, who survive only through hundreds of thousands of dollars in medical intervention. The Schulzes pay little attention. They clearly come down on the side of keeping them alive.

Pediatric physicians say federal Baby Doe legislation has taken life-and-death decisions out of their hands; they are compelled to save life when there is any sign of life. As a result, more and more critically ill infants are surviving.

“But sometimes it seems like a form of child abuse to save some of these kids,” said one pediatrician.

“We are more able to maintain life but we can’t guarantee the quality of life,” said Dr. Michael Segall, director of neonatology at Children’s Hospital.

There are about 25 local families like the Schulzes who care for nearly 100 medically disabled children placed by the county Department of Social Services, according to social worker Shirley Tisdale. Most of these children are wards of the court. Many suffer defects from premature birth and from their mothers’ drug and alcohol addictions. They have been abandoned by their parents or taken away from them. The Schulzes have cared for the sick children of bag ladies, prostitutes and unwed teen-agers.

Hospitals and other community agencies also help find foster homes for severely ill children from overburdened families who cannot give adequate care because of additional children and responsibilities.

“A lot of these kids died at birth just 2 1/2 or three years ago,” Tisdale said. “We’re seeing more of them all the time, and we don’t have enough homes for them . . . meanwhile, the laws are making it tougher to get them into homes and out of the hospital.”

Gray areas of liability and insurance often keep sick kids from moving out of the hospital.

“If a patient is on life-support systems in the hospital it is obviously someone’s obligation,” said Segall. “But if we send that patient home, society’s vision and responsibility is less clear.”

The county pays between $315 and $850 a month to keep sick children in foster homes, depending on the child’s medical problems, Tisdale said. The money compensates foster parents for the care they give; they do not make money, she said. It can cost as much as $1,500 a month to keep the same children in the hospital, she added.

Some Thrive in a Foster Family

More importantly, children who may languish in hospitals under the care of three shifts of nurses and busy doctors thrive in foster homes where they grow close to one family, she said.

“Whether or not such children should live is not the question . . . if they’re here and they’re alive, they deserve everything we can give them,” Tisdale said. “My foster parents share the same philosophy.”

She described foster parents she knows: the couple who began caring for severly sick children after their own two disabled children died; the 91-year-old woman who had attended her bedbound foster children for years before her own death, when her granddaughter took over the work, or the family who thought nothing of taking their six foster boys--all suffering from Downs Syndrome--camping.

“They spend a lot of time down on the floor with these kids, getting them to progress, and when they do, it’s a tremendous accomplishment. It’s a day for celebration.”

Writer Isak Dinesen once claimed that simple people find it easy to take in other children and treat them as their own. The Schulzes are hardly simple-minded; they appear intelligent and sensitive. But simplicity comes through in their inability to explain why they center their lives around these children and their matter-of-fact attitude and treatment of them.

They claim that the support of doctors, social workers and neighbors makes their work easy. They act as though feeding a bedbound child through a hole in the stomach were no more trouble than putting on a bandage, or as if they had nothing else to do but take the children to appointments with specialists every day.

They have plenty else to do. Kay Schulz plays violin with the San Diego County Symphony as well as with a weekly quintet. John Schulz makes violins as a hobby. They both enjoy square dancing. The couple brings most of their activities to their house now that they are homebound with tiny invalids. Neighbors have learned to care for the children, because baby sitters are nearly impossible to find.

“The quality of life isn’t going to be too good for some of these kids,” Kay Schulz concedes, while concocting a puree of milk and baby food. She pours the liquid into a large syringe and brings it to a light-filled bedroom where 19-month-old Stephanie Robles lies most of the day in a chrome hospital crib that Kay has lined with sheepskin. Electronic monitors, automatic suction machine and tubes to green oxygen tanks cover a nearby bureau.

The girl, a victim of myotonic dystrophy, is sleeping on her side, dressed in a crisp pink seersucker romper, matching barrettes in her brown pigtails. Toys dangle from string inches above her head and rest against the slats of the crib. Schulz said she placed them wherever the girl may look to stimulate her.

Has No Control of Muscles

Stephanie’s neurological disorder blocks use of her muscles, so that she cannot chew food, or even smile. While Kay pushes the liquid lunch through the syringe and into the tube that leads to Stephanie’s stomach, silent tears trickle down the girl’s face. They are the only indication that she is displeased at having been awakened from a nap to take food, which she has never tasted.

Stephanie has had a tracheostomy and a gastrostomy. She wears glasses to clear the blurred vision of her crossed eyes; a brace for her back to keep her from collapsing when she is propped to a sitting position and braces for her feet to make them straight enough to use a wheelchair--if that time ever comes. Nobody knows what to predict for Stephanie, Kay said. Doctors expected her to die long before now.

“They always tell us these kids probably won’t survive. But they do, and they respond so well. Stephanie has come so far,” Kay says proudly. “She couldn’t move a muscle when she came and now she kicks her feet in the air and pushes the toys around in her crib.

“People think what we do is so hard, when for me it’s not even work, it’s fun. It’s much harder for the natural parents, who have the whole emotional thing to deal with. They think they failed somehow, and they worry about always being responsible for a sick kid. We know that if we had to, we could walk away from it all anytime.”

They smile, recalling children they have cared for, and point to a picture stuck in a pane of their china cabinet. The studio portrait of a 2-year-old boy--their first disabled child--seated on a garden stool doesn’t indicate that he weighed only 1 1/2 pounds and addicted to heroin when he was born more than three months prematurely. It doesn’t reveal his cerebral palsy, the tube that runs under his skin from his head to his stomach to drain fluid from his brain, his colostomy or bones that had been so brittle from rickets they would break when nurses handled him. One of those nurses has just adopted him; the Schulzes baby-sit him on weekends when his new mother works.

The picture shows a slight child with shiny black hair and skin the color of creamed coffee. His narrow face has a cast that seems wiser than other children his age, but his clear eyes and bright smile seem to be inviting life, however he is to live it.