One tough unit:

Caring for premature and critically ill infants is emotionally demanding

by Charmaine Daniels

Shannon Bourgault '03

Shannon Bourgault ’03 has worked at neonatal intensive care units around the country, including two years at Maine Medical Center and two years at Children’s Hospital of Philadelphia. She is headed to graduate school at the University of New England to become a nurse anesthetist. Out of 150 applicants to the 27-month program, she was one of just 20 who were admitted.

Shannon Bourgault '03 was just 22 years old when she fell in love with Caleb, an infant who still causes her eyes to tear up. Newly trained as a nurse in the neonatal intensive care unit at Maine Medical Center, she had become Caleb's surrogate mom. Because he was born with his abdominal organs on the outside of his body, he needed to live inside a sterile bubble until surgery could be performed when he was a bit older. Just when they thought he had made it through, he caught pneumonia. Two days later, he died in her arms.

"I was devastated," she says. "I got way too attached."

A lot can go wrong in a neonatal unit. Babies born prematurely and those with serious medical problems require ventilators, wires, IVs, pumps, sensors and monitors - and lots of painful procedures, many involving needles on extremely tender skin. The work takes a caring, compassionate person, yet one who is organized, efficient and very observant. A preterm infant can be fine one minute and near death 20 minutes later.

"You have to be able to work well autonomously because the doctor is not always there," says Bourgault.

After six months of specialized training and two years of working experience at Maine Medical Center, Bourgault signed on as a travel nurse. First, she headed to a neonatal intensive care unit (NICU) in Washington, D.C., then others in Los Angeles, Boston and Philadelphia. Although a travel nurse typically stays for 13-week stints, she stayed in Philadelphia for two years.

baby in ICU

This baby, who initially weighed 2 lbs., 7oz, is shown four days after his birth in 1991.

She keeps photos of "her babies" stored on her cell phone. She proudly shows off Mary Ann, a former patient at Children's Hospital of Philadelphia, who needs a liver and colon transplant. Mary Ann's mom was just 17 years old and didn't visit her daughter. Bourgault filled in, even buying Mary Ann a pumpkin outfit for Halloween and a pink-and-red one for Valentine's Day. She smiles still, thinking of her "muffin" with the shining face.

A key part of a neonatal nurse's job is talking to the baby's parents. Since the nurses are assigned just one or two patients and can't really leave the patient's room like nurses on other floors do, a bond can easily form between the frightened parents and the caregiver. One mom whose baby Bourgault nurtured for five months celebrated by taking her out to lunch after the baby was released from the hospital.

"It's so different than med/surg units," Bourgault says. On those units, nurses typically have six patients and, according to Bourgault, have to play "beat the clock" to take care of them all.

As an NICU trainee, she honed her skills with the help of a mentor. Now completely confident, she says the doctors trust her assessment skills as well.

One of her main duties is advocating for her tiny patients. She's learned not to be afraid to ask questions of the doctors or other nurses, and to look things up and seek out new information.

Non-clinical aspects of the job are important as well: Making decorative signs for isolettes or taking pictures of the parents holding the baby so they can send them to family members. If a baby dies, the nurse often makes a keepsake box with their footprint, thumbprint and medical band. After a death, they also take the baby to the morgue.

Most babies, however, go home after two or three months, and Bourgault says seeing a healthier baby go home from the hospital is her favorite part of the job. Handing a baby to mom's waiting arms for the first time after the birth comes in a close second.

Now living in Saco, Maine, and headed to graduate school to become a nurse anesthetist, she says, "I'll miss it. I love the babies. I like the intensity."

Kathy Campbell '06 of McKeesport, Pa., has practiced neonatal nursing for 26 years at West Penn Hospital in Pittsburgh, for three years as a staff nurse and for 23 years as a nurse practitioner. She is responsible for doing procedures such as inserting breathing tubes, inserting umbilical lines, and inserting central lines for delivering IV fluids and medicine to neo-nates. She also attends deliveries, prescribes medications, speaks with parents about their infants, and handles discharge planning for infants with diagnoses that will require follow-up medical treatment at home.

Her unit has 40 beds and a step-down unit on the pediatric floor with eight beds. A large team of neonatologists, respiratory therapists, nurse practitioners and nurses staff this NICU that serves a three-state area. Her unit had more than 500 admissions last year; some of those were very premature infants, weighing little more than 1 pound.

Kathy Campbell '06

Kathy Campbell ’06 is a neonatal nurse practitioner at West Penn Hospital in Pittsburgh. In her 26 years in the field, she has seen vast changes in the approach to taking care of critically ill infants.

Campbell has an unusual schedule. She works six days a month, but with long shifts including 10-hour and 24-hours shifts. The time off in between is helpful. She herself lost a baby halfway through pregnancy, so she knows how hard it is for parents who lose a baby. Though she has built up a wall after all these years, "It still gets to me when we have a death .... I have tears, they just don't come as frequently," she says.

When she first started 26 years ago, the neonatal nursery was a large open room. Fifteen years ago, it was renovated into six rooms, in order to keep the noise and infection rate down. Campbell says individual rooms are the new trend, adding that improved privacy helps parents bond with their children as well.

As an NICU veteran, Campbell has seen many changes over the years, including new medicines with fewer side effects, new types of isolettes that cost more than a BMW, more therapies to avoid muscle contractures, and more advocacy for breast milk, kangaroo care (skin-to-skin contact with a parent), quiet hours and softer lighting. "Twenty-six years ago, the lights were on full blast, the alarms were loud, there was lots of traffic," she notes. Now thick quilts placed over the top of the isolettes maintain quiet and darkness, and nurses try to conduct conversations away from the isolettes.

Campbell also teaches student nurses on the NICU rotation for the nursing school affiliated with West Penn. Her master's degree in nursing from Saint Joseph's is a "fall back" if she has to leave her clinical career. "When you have really bad days, you can feel like you've had it," she states. "Right now we have a bunch of 23-weekers, and that's tough."

A strong advocate for the weakest babies

Over the last 20 years, preemies have had a stalwart and passionate advocate. Developmental psychologist Dr. Heidelise Als, a professor of psychology at Harvard Medical School, believes preemies do best in a quiet, dark environment much like the womb. Her research has revolutionized the field of neonatal care.

While preemies need life-saving procedures that typically imply bright lights, needle pokes and a generally busy atmosphere, Als has discovered that their brains also need quiet to avoid overstimulation while precious brain cells continue to evolve.

Rather than viewing the baby as a collection of organs to keep alive, Als considers preemies as small people whose body language can let you know what they need. She has developed a method of treating preemies called the Newborn Individualized Developmental Care and Assessment Program, or NIDCAP. It can mean things like a phone in an NICU will vibrate instead of ring. Or that the mother can hold the baby in a rocking chair during a stressful procedure. Or that a baby is nested with a cozy bunting inside a darkened isolette.

Conducting research at Brigham and Women's Hospital in Boston, Als has now proved that preemies on the NIDCAP protocol show significantly better brain development and longer-term outcomes.

Since about 50 percent of preemies typically have cognitive or disciplinary problems in school, she believes if her program were more broadly implemented, it could save a huge amount of rehabilitation and special schooling expense. On the basis of her research backed up by EEG and MRI results, she has created 10 domestic and seven international centers to train caregivers how to structure the care and environment for preemies.

Of these very tiny patients whose body language she has studied and listened to closely, she says, "Amazingly they all come driven to give it their best shot."

A moral dilemma

The survival rate for premature infants has improved over the last two decades. The threshold at which they can survive is now considered 23 weeks (40 weeks is considered full term). But at 23 weeks, they are extremely fragile. They likely need a tracheostomy to breathe, a G-tube to eat, and have bleeds in the brain. "They may never talk, walk or eat," says nurse Shannon Bourgault '03. "It's a moral dilemma for everyone," she adds. "Babies are not meant to be outside the womb at 23 weeks, but I don't know how I would feel if it was my baby."

At the Pittsburgh hospital where Kathy Campbell '06 works, the parents of "23 weekers" are given the option to not resuscitate, since the babies can't breathe on their own. Prior to delivery, parents are given information on medical treatments and probable long-term outcomes, and they consult with the neonatologist, many of whom do not sugarcoat the situation. "More frequently than not, we resuscitate," Campbell says. If parents choose no further treatment, the baby is taken off the ventilator and the parents take their child into a private room to say their goodbyes.

Campbell agrees with Bourgault that babies born at 23 weeks represent a moral challenge. She knows the outcomes, because many children come back for five-year reunions and she sees the sad long-term effects: chronic lung disease, slurred speech, coordination and movement disorders, cognitive deficits, and more. Many of these babies will face learning disabilities and won't be able to participate in regular classrooms. She worries about the burden on society and the school systems. "I am Catholic, and I still struggle," she admits. "Are we playing God by saving these kids? Or has God given us the equipment and knowledge to save them?"