Childrens Hospital’s Units for Critically Ill : Joy, Heartaches of Treating the Young

When the elevators doors open, the fifth floor looks like any other wing at Childrens Hospital of Orange County.

Bright murals of Disney characters decorate yellow and orange walls. Wall-to-wall carpet muffles sounds.

Then the eye sees the perpetually filled pot of coffee, haggard parents clustered in the lobby, high-technology machinery waiting in a hall, and a buzz of activity pitched just above the hum of equipment constantly monitoring patients.

Units for the Young

This is the site of Childrens Hospital’s intensive care units for critically ill newborn infants and children.

This week, it is home to the five surviving Frustaci septuplets. But while public attention focuses on the five newborns, teams of six doctors, more than a dozen respiratory therapists and 130 nurses are tending to another 19 critically ill infants and 12 children ranging in age from 2 months to 16 years.

In one corner of the Pediatric Intensive Care Unit, 26-year-old Esther Sur hovers over a warming table where her 2-month-old son, Joshua, cries soundlessly against a respirator tube in his windpipe following open-heart surgery.

A nurse in a blue gown gently says, “Excuse me,” to get around the anxious mother, who has not left her second son’s bedside for more than a few hours since he was admitted last week.

“Since Joshua was born, it has been a nightmare,” said Sur, a moving company dispatcher from Anaheim.

“You don’t know what it’s like until you have a baby in here yourself. I had a girlfriend at work whose baby was here. I told her how bad I felt and tried to comfort her, but I had no idea what she was going through,” she said, breaking into tears.

“You get anxious. You want to take him home. You just want to pick him up and hold him, comfort him. But you can’t because he’s all hooked up to the machine,” Sur said of the respirator, which breathes for the baby.

Problems of the Lungs

In another corner, two nurses lean over a 15-month-old baby with broncho-pulmonary displasia, a chronic condition of premature children who have underdeveloped lungs.

In another corner, a baby girl lies in a clear plastic bassinet wired to an apparatus that beeps when she forgets to breathe. The beeps emanate from machines around the room.

Nurse Diana Gilbert, an eight-year veteran of the pediatric intensive care unit, said the baby was born 14 weeks prematurely and suffered from the same lack of lung development as the Frustaci infants, who were 12 weeks premature.

Now 6 months old, the baby has been readmitted to Childrens Hospital because she weighs only 4 1/2 pounds, Gilbert said.

Across the room from Joshua Sur is a 2-year-old girl recovering from the second open-heart surgery of her young life. She smiles wanly as her mother strokes her forehead and puts on a new cassette tape to entertain her.

Dr. Nick Anas, one of two pediatric intensive care specialists on the team of six doctors, said other children in the unit have bacterial meningitis or congenital skin, heart and central nervous system diseases.

Personal Commitment

Down the hall, in the Neonatal Intensive Care Unit, are 24 infants, mostly premature and with a range of problems including hyaline membrane disease, the most severe ailment threatening the 8-day-old Frustaci babies.

A high level of personal commitment and an extraordinary amount of teamwork are needed to deal with the constant life-and-death emergencies of this ward, said Anas and the other nurses, therapists and doctors interviewed.

More than that, caring for these children requires a special kind of patience and ability to communicate with distraught parents fearful of the complex machinery and medical terminology they do not understand.

“Pediatric and neonatal intensive care nurses are a unique breed,” said Jo Hanson, a veteran of 13 years in such work who now trains others in the unit.

“There are a great many excellent nurses who give great care to their patients, but they can’t deal with the family,” Hanson said. “They’ll say, ‘Don’t ask me any questions. Just let me do my job.’ But with children, you have to deal with the family. It is very much a learning, teaching atmosphere.”

When families first arrive, “The auditory assault is overwhelming,” Hanson said. “The sights are frightening enough, but you add the sounds and some people just can’t handle it.”

‘Scared to Death’

“It’s true, you know,” said Dottie Andrews, a Mission Viejo housewife who helped form the hospital’s Parent-to-Parent support group after her third daughter was in the neonatal intensive care unit (NICU) 6 1/2 years ago.

“You are already scared to death when you step off that elevator, and the majority of us have never seen a place as futuristic as the NICU,” Andrews said.

“It rearranges your priorities, I’ll tell you that. And for a lot of us, there’s a lot of guilt involved,” she said, referring to mothers of newborns. “We wonder if we did something wrong.”

And for the first few hours, sometimes days, most parents are unaware of anything but “their baby, their nurse and their doctor,” Andrews said.

“Then you meet other parents in the lobby and find out that you’re not the first person in the world this has happened to.”

Although doctors and nurses are sensitive to parents needs, Andrews points out that their primary job is to care for the sick children on the floor. To fill in potential gaps, Parent-to-Parent provides counselors who have had a child in one of the intensive care units.

“Your family and friends usually support you and help you deal with things like taking care of other children,” Andrews said. “But it takes another parent to really understand.”

Handbook Available

To aid those distraught parents, the support group also has developed a handbook to help in understanding the technical terms, the machinery and how it functions.

Parents are allowed to stay with their children except when surgical procedures are performed on any child in the unit. Siblings and other close relatives may visit if the parents approve.

Some parents, like Esther Sur, need to be reminded to get a bite to eat. If they’ve nodded off in a chair at their child’s bedside, they’ll be directed to a room where cots have been set up for them.

Most hospital staffers also zealously protect the privacy of both patient and parent--sometimes from the curiousity of other parents.

“Lookie-loos” are politely discouraged, Hanson said.

The arrival of the Frustaci infants brought a new addition to the entry of the neonatal unit--a 24-hour security guard.

Last Tuesday, the day the septuplets were born, Andrews said anyone with authority to visit the newborn unit “managed to get up there and have a look.”

Once they did, however, she said everyone realized they weren’t any different than the rest of the critically ill babies in the 28-bed unit.

“It’s nothing new--there are just more of them. So everybody went back to work,” Andrews said.

Before the septuplets were born, Andrews said she was worried about how other parents would react--whether they would feel “shoved aside . . . as though their babies weren’t as important.”

“But there were no complaints,” she said.

Crucial Planning

From a medical standpoint, Dr. Anas said the thing that most impressed everyone involved in the delivery of the Frustaci babies is that it all went so smoothly. Heavy advance planning and repeated drills allowed the unit to take in the mini-avalanche of patients without breaking stride in the care of the rest of the children.

“What we were all most thrilled about . . . is that it worked like an efficient, well-oiled machine,” Anas said.

Teamwork is the key, he added.

“It’s like any team that works well together--the difference is that we’re talking about life and death here,” he pointed out.

Dealing with constant emergencies produces its own problems, say the people who work on the fifth floor.

There is the high stress associated with being constantly in demand and making life-saving decisions, often on a minute-to-minute basis.

“If you let it get to you, then you should probably find another job,” said Lea Endress, a respiratory therapist who has worked at Childrens Hospital for nine of his 12 years in the field.

“On the fifth floor, we just say it’s day-to-day survival,” Endress declared.

Then there is the high mortality rate, a particular problem when staff members must work so closely with family and patients.

“People say it gets easier, but I think it gets harder,” said Diana Gilbert.

Recently Gilbert cared for a 4-year-old with leukemia who eventually died.

‘Helped That Little Guy’

“It was hard, but I felt that I helped that little guy a lot, and brought him some happiness--and some comfort and understanding to his parents,” she said.

Anas and others said they plunge themselves into activities outside the hospital to reduce the stress levels.

“If you don’t force yourself to leave at the end of the day, you may not be able to come back tomorrow,” he said.

“But we all thrive on this work or we wouldn’t be doing it.”

Said pediatric intensive care nurse Kathy Hopper, “It’s awfully rewarding to see someone at death’s door going out of here in mom’s arms to live a healthy, happy life.”

The ups may not occur as frequently as the downs. But Endress and others say they find comfort in knowing they did the best they could for each infant and child.

There is nothing anywhere in the dark-glass Childrens Hospital tower quite like the fifth floor. And those who work there say they wouldn’t trade places with anyone.

“It’s intense--intense for the patients, the families and the staff,” Andrews said.

“When things are going well, it can be very relaxing. But it always gets back to the reality that there’s always somebody on that edge--that fine line between life and death.”