Oasis of Hope : For the Fragile Young, a Center Is Rising to Give Relief to Parents
Tethered to an oxygen unit, 23-month-old Elizabeth Wrensch toddles about the living room, tripping over the unit’s cord, bumping into furniture. Nearby, her brother, Robert, 7 months, drinks happily from a bottle while snuggled in his mother’s arms.
A shrine-like collection of baby pictures decorates a wall in Jim and Candy Wrensch’s Santa Ana living room--birth certificates and other mementoes of their 23 months of fear, anxiety and hope since their children were born severely premature. Each weighed under two pounds. Elizabeth Ann survived 24 operations by the time she celebrated her first birthday.
Now, their son and daughter are doing so well that Candy and Jim call them the miracle kids. Their car license plate frame proclaims: Miracle Baby.
But some misery has come with the miracles. The couple have had to turn their home into a makeshift hospital ward and learn how to become nurses. They rarely leave the house, never leave the kids and often are awakened at night by their children’s sleep monitors.
Just about the time she felt like giving up, Candy noticed a sign posted in front of a building under construction on her street: “Future home of the Center for Fragile Children.” She called her doctor and said, “My kids better be No. 1 on the list.”
Kangaroo Kids, the Center for Fragile Children, is due to open early in August to help children like Elizabeth and Robert. Its founders believe it’s the first of its kind in the county--and among the first in the nation--to provide comprehensive care to children with multiple, ongoing medical problems.
The for-profit center, on Bush Street in Santa Ana, will provide monitoring and nursing services to youngsters who have been released from the hospital but who are too sick or weak to go home without nursing help. Premature infants and children up to age 3 whose doctors feel they need ongoing medical care will be accepted.
The center, to be open from 6 a.m. to 10 p.m. weekdays and some weekend hours, is designed to accommodate 40 children. On the waiting list are those with seizure disorders, heart, lung and neuromuscular diseases, and cancer and post-operative patients, although the majority of the kids are premature infants with respiratory problems.
About 60% of the staff will be registered nurses with neonatal experience and 40% licensed vocational nurses.
Ten physicians, including renowned pediatrician T. Berry Brazelton of Boston, serve on the center’s national advisory board. Another 10 specialists serve on the facility’s professional services committee and will periodically review cases and sit in on quarterly meetings at the center.
Because the center is not strictly a day-care center nor a medical facility, it doesn’t require state licensing and doesn’t fall under the jurisdiction of the state Department of Health Services, which licenses medical facilities, or the state Department of Social Services, which licenses day-care centers.
“It’s really a brand new area, and it doesn’t fall under any jurisdiction,” says Mary Kaarma,a supervisor in the Department of Social Services community care licensing division.
The center will “definitely be licensed,” Healey said, when an agency that has the proper credentials to oversee it is chosen.
Candy Wrensch believes the center is exactly what her family needs “because you have to have about five arms” to keep up with her son and daughter. “You can’t hold him and chase her. I’d been trying to get used to the fact that there was no help coming when I heard about Kangaroo Kids.”
For almost two years, a group of doctors and other pediatric specialists have been planning the center, which is owned by Care Visions Corp. in Anaheim. Spearheading the project are Tim Healey, a child development specialist, and Molly Chapman, a pediatric nurse practitioner.
Chapman and Healey believe that parents need and want a homey place for their sick children that--at about $20 an hour--would serve as a more cost-effective and nurturing alternative to hospitalization and home nursing care.
“We work with fragile kids, and we found the most difficult aspect was discharging them after their prolonged stay in the hospital,” says Healey, who has a master’s degree in physical therapy.
Too many parents were reporting stress and exhaustion in coping with the children’s needs and too many children were being readmitted for medical problems because they weren’t getting enough professional help, he says. “Parents were frustrated at having to play the nurse role, and the kids needed special developmental help that they were not getting in the home.” After nearly two years of their children being hospitalized, the Wrensches face at least several more months of dependency on medical equipment and nursing. Their problems have been multiplied by a double dose of preemies.
Elizabeth Ann was born 16 weeks early, weighing 1 pound, 7 ounces. When she was 4 months old, doctors propped her up in a baby-doll seat inside her hospital incubator. When she was released from Childrens Hospital of Orange County 9 1/2 months after birth, she went home to round-the-clock nursing care and a mother trained to care for her by CHOC nurses. Today she is still fed through a stomach tube and tied to a portable oxygen unit.
After Elizabeth’s release, her parents gradually adjusted to her special care. But soon Candy Wrensch, now 42, found she was pregnant again. Twenty-six weeks after Elizabeth came home, Robert James was born, 14 weeks early, on Nov. 10, 1988.
In those early months, the children struggled with lung disease, breathing disorders, eye and ear problems and bilateral hernias. Elizabeth underwent so many surgical procedures that “she looked like a spaghetti factory, she’d been cut up so much,” says Candy Wrensch, whose doctors are not sure why she hasn’t been able to carry a baby to full term.
Even now, Elizabeth doesn’t know how to suck, swallow and breathe at the same time and continues to take food through a gastrostomy tube. Both children sleep with monitors because they sometimes stop breathing while they sleep.
When Robert came home from the hospital, the family had two 24-hour nurses for the children, paid by their insurance. Gradually home care was decreased, and a few weeks ago dwindling insurance benefits cut it back to six hours a month. The Wrensches have been told that their nursing benefits will be extended for the center because it will cost less than home care.
“It was devastating,” says Candy Wrensch, referring to the cutback. “I didn’t know what I was going to do, really. My husband had another job and had to quit it and start his own (welding) business to be here to help.”
“There were many times that we didn’t think we’d get to this point,” Jim Wrensch says.
A decade ago, children born as small as Elizabeth had little chance of survival, says Allen Iseri, a pediatrician with Doctors of Children of Orange County medical group. “Nowadays, with our technology, the rates of survival go up every day. We are seeing children surviving but with long-term medical problems. Kangaroo Kids fits a need in the community that before hasn’t been met.”
Ralph Rucker, director of CHOC’s pediatric pulmonary service and a member of the Kangaroo Kids advisory board, believes the center will offer “a major improvement in the health care of fragile children. It will also allow the parents to be free of that kind of responsibility for a period and rejuvenate their dedication to their kids and allow them to relax and enjoy each other. You know, marriage under this kind of stress can run into trouble.”
For parents who can’t afford the fees or whose insurance won’t pay, the center may turn out to be more a temptation than reality.
Gretchen Cassidy of Irvine says she has been waiting months for the kind of nursing care that Kangaroo Kids will provide. Her son Michael, 2 1/2, was born 12 weeks early and suffers from lung disease. He needs oxygen 24 hours a day.
Her hopes were dashed when her insurance company refused to pay for any additional nursing care, either at home or the center. The center “was too new an idea,” says Cassidy, a single mother and real estate agent.
Jeff Gasser, president of Care Visions, says Cassidy is in the minority.
“Typically, the insurance policies will pick up all of these charges,” he says, referring to the day-care costs. “Of course, every policy is different, but the center is an alternative that costs a lot less than services most insurance policies are already paying.”
At $19 to $21 an hour, Gasser says, Kangaroo Kids will cost about 40% less than home nursing and about 60% less than hospitalization.
Jeanne Sorenson, a case manager at Blue Shield of California, says her company is excited about the concept of Kangaroo Kids. “This is the type of alternative care we are looking for. It will be less expensive . . . than home nursing and hospitalization. It will also allow a parent to go back to work or a parent to get some sleep.”
Chapman says the center’s criteria in accepting children are that they need nursing care but are stable enough to go three to four weeks without requiring hospital treatment. Approval by the child’s physician will also be required.
Chapman and Healey are trying to create a fund-raising group to help pay for the care of children not covered by insurance. They also hope to persuade state officials that Medi-Cal should pay for the services when private policies won’t.
Sprinkled among the breathing monitors and oxygen units at Kangaroo Kids will be teddy bears, climbing toys and cribs with water-bed-type mattresses, specially designed to calm colicky babies. The building will house an office for a parents’ support group and a parent resource library. The rooms, in soothing soft colors and low lights, will be patterned after day-care centers for healthy kids rather than hospital wards.
“We want to take all the high technology available and put it in a home setting,” Healey says. “The aim is to normalize the child’s environment as soon as possible, and we want the parents to participate, but as parents, not as nurses.”
One parent hoping to ease her own nursing burden is Janet Stone. Her daughter, Erin, born 6 months ago with congenital heart disease, is fed through a stomach tube. The baby is highly susceptible to infections and often vomits during feedings.
Stone believes that enrolling Erin at the center would help her entire family. They try to have as much of a normal routine as possible, but because Erin must be fed every four hours, they really can’t go out for any length of time.
The challenge is finding skilled and affordable help for Erin, Stone says. “The only way I feel comfortable leaving her is with someone with the medical background that she needs.
“You know, having a baby was so long in coming,” she says. Then having a child with severe medical problems was devastating. “But it is encouraging to know that there is help.”