Small Miracles Neonatal ICU Blends Science and Compassion

They have a ‘graduation party’ each June at the Neonatal Intensive Care Unit, or NICU, as it’s called, at Baystate Children’s Hospital.

Ostensibly, it’s for the children who were patients at this facility over the course of the previous year. In reality, though, it’s for the parents of those children, many of whom were born weeks, even months premature, and thus started their lives under blue lights in a room that’s kept dark and quiet to replicate the womb, but is in all other ways a very warm place.

“We’d invite all our patients back for the party,” said Dr. Gary Rockwell, assistant director of Newborn Medicine in Baystate’s Department of Pediatrics, “but we obviously don’t have the room. We’d need a pretty good-sized football stadium to do that.”

Indeed, as he started to do some math to figure out just how big that guest list would be, Rockwell glanced upward, then at his computer looking to find its calculator, and then decided on a round number — “maybe 23,000 or more.”

As he talked with HCN about the NICU and the work that goes on there, Rockwell was pressed for some other numbers, such as those concerning the ages of the patients when they arrive — some were born as early as 24 or 25 weeks into a normal 40-week gestation period — and their weights; some are less than a pound, although those working here use metrics, meaning, in extreme cases, fewer than 500 grams.

But while he supplied such figures, knowing that they help people grasp the concept, Rockwell stressed early and often that this unit isn’t about numbers. Instead, it’s much more about names … such as Graham Rockwell. Actually, that’s Capt. Graham Rockwell, the doctor’s son, now age 26 and doing a tour of duty with the U.S. Army in Kandahar, Afghanistan. (There’s a picture of him and others from his unit just a few mouse clicks away on Gary Rockwell’s computer.) He was a NICU patient, as was his sister, Margo, 28, who will soon become a doctor.

“Every once in a while at a high-school basketball game, someone will come to me and just introduce themselves,” Rockwell continued, noting that one of the ways he ages himself is to note that one of the doctors on staff at the NICU was one of his patients. “The last one was a cheerleader; she just said, ‘I’m all right.’ The last time I saw her, she weighed about three pounds.”

The NICU is also about technology, and equipment with simple yet effective names such as the ‘thermal bag,’ which provides a womb-like environment, and the ‘cool cap,’ which, as the name suggests, is designed to keep the child’s head cool. “We can’t do as well as moms can — we’re a substitute,” Rockwell explained. “We can’t make them grow as fast or as well as they can by staying inside their moms, but we try to do the best we can.”

But mostly, this unit is about compassion, said Susan Chamberlain, MSN, RNC, clinical nurse specialist in the NICU, meaning not simply care for the tiny patients, but large doses of support, on a number of levels, for the parents and siblings of those sleeping under those blue lights.

“All parents have a vision of having a baby and walking out of the hospital in a couple of days as a happy family,” she said. “This unit is the complete opposite; who imagines their baby to be this size, on a ventilator, under blue lights, in a box? No one imagines any of that.”

Baystate’s NICU, the only unit of its kind in Massachusetts west of Worcester, is what Rockwell called a “self-contained unit” within the hospital, with its own pharmacist and X-ray facilities, a dedicated social worker, nutritionists, and other staffers who work together to produce effective results.

“It’s a total team effort,” said Rockwell. “There’s really no other way to describe it; it’s teamwork.”

For this issue, HCN paid a visit to the NICU to observe and to learn about this unit and how it goes about providing its special brand of care for infants and their parents.

Womb with a View

While providing a tour of the unit, Rockwell stopped and gestured to a nurses’ station.

“In December, those walls will be covered with Christmas cards from top to bottom,” he said, adding that they come from the parents of former patients — some of them now old enough to have children of their own — who have never forgotten the people who, while caring for their infants, helped see them through what was probably the most difficult time in their lives to that point.

This isn’t Rockwell’s official job description, but it might as well be. A 31-year veteran of the NICU, he said many things have changed during his tenure — science and technology now allow more babies born months premature to not only survive but live normal lives — yet the basic approach to providing care hasn’t changed, and won’t.

Summing it all up — meaning care to the infants as well as counseling to the parents — Rockwell said simply, “no one ever plans for this happen; we try to explain to people that we’re going to reach the top of the steps.

“Sometimes it can be frustrating,” he continued, while elaborating on this trip. “The example we give is that it’s like walking up a set of steps — you go up two and back one, you go up three and back one. You eventually get to the top, but it’s not always a perfectly smooth course. But you get there.”

As they talked about the design of the NICU and various features right down to the paint colors chosen for the walls, Rockwell and Chamberlain stressed repeatedly that the basic mission is to replicate the womb in every way. Well, almost every way.

“We just haven’t figured out the creation of the floating part,” she said with a laugh. “We can’t make it exactly like the womb, but we get close.”

Which means it’s relatively dark — doctors, nurses, and others still have plenty of light with which to work, obviously — and extremely quiet. ‘Subdued’ was the word Rockwell used.

“If you listen for a moment, you don’t hear much — and that’s on purpose,” he explained. “There’s acoustic tiling, the flooring is soft and sound-absorbing, and the walls are all neutral, earth tones. Babies can’t talk, but they can tell you how they feel, and one of the ways they do that is with how they look, and we want to know if there’s any yellow, red, or blue, so we use very neutral colors here to help us.”

Chamberlain said these and other design elements are implemented with the young patients’ neurological development in mind.

“When you think about it, these babies aren’t supposed to be born yet — they’re supposed to be in mom’s womb. Well, what is mom’s womb like? It’s dark with muffled sounds. We want to minimize light and noise to the best of our ability, and it’s all based on development of the brain.”

Within this environment, NICU staffers — doctors, nurses, a pharmacist, social workers, and many others — administer care on a number of levels. In general terms, much of the care can be described as doing what the mother would do for the child if it were still in the womb. And this is where the science and technology come into play.

As he stopped at the so-called ‘draft bed’ containing one of the unit’s smallest patents, at just over 28 weeks, Rockwell said the equipment is designed to ease the infant through what would have been the last three months of a normal gestation period.

“It gives the baby a neutral thermal environment so she’s not using energy trying to stay warm,” he explained. “She uses energy to grow. The blue light overhead is designed to keep the bilirubin in their skin, the chemical that gives them jaundice, from building up.”

Walking over to another pod, as the smaller care areas within the unit are called, Rockwell stopped at a slightly older neonate lying in what’s known as a humidity tent, designed for, among other things, maintaining skin integrity.

“The younger you are, the thinner your skin is,” he explained. “It thickens up after two weeks, but you have to be very careful during those first two weeks; they lose water, and anything that’s on their skin can get into the bloodstream very easily.”

In general, babies stay in the NICU until roughly the time they would have come into the world under normal circumstances, said Chamberlain, although each case is different.

“The babies tell us when they’re ready,” she explained. “It’s when they can be in an open crib, when they don’t need to be a box anymore; when they can take all their feeding by breastfeeding with their mom or by bottle; when they can gain weight. They let you know when they’re ready to go home.”

Born Identity

While the NICU is dedicated to the care of infants, much of what goes on there is focused on family members, especially the parents of the young patients.

As Rockwell and Chamberlain noted, standing in the NICU and looking at a baby in its own plastic world is often a parent’s worst nightmare. So those working in this unit are especially attuned to the parents’ emotions, fears, and often never-ending questions.

They make a habit, for example, of telling parents to watch their children, not the machines monitoring their condition and vitals such as blood-oxygen levels, because seeing needles move can often cause unnecessary distress. In some cases, these monitors are actually covered to keep parents and grandparents from obsessing over them.

NICU staffers help parents in a number of ways, with everything from so-called ‘pump rooms’ for mothers breastfeeding their children to assistance with holding their babies — a delicate matter in these circumstances — or finding other ways to get close when holding them simply isn’t possible, such as when they’re having issues with breathing.

“We teach them such things as how to touch the baby, how to put their hands on them, how to talk to them softly, how to bring in things from home — like clothing, toys, pictures of other family members, dogs, and cats — and place them in the isolettes, these boxes,” she explained. “This makes the whole situation more family-oriented.”

But as soon as the babies are stable enough, NICU staffers move on to lessons in something called ‘skin-to-skin care’ or ‘kangaroo care.’

This is when the child is placed on the bare chest of the father or mother, while either reclines in a chair, with a blanket placed over the two.

“We’re built to do that — we’re like little furnaces,” said Rockwell. “Our chests heat up with the baby on top; the inside of the chest makes a lot of heat very quickly to keep the baby warm.”

Support for the parents continues right up the point of discharge, said Rockwell, adding that this is a time that parents look forward to and dread at the same time, because now the care of the baby is in their hands, not that of a highly trained team of professionals.

To prepare them for that moment, the NICU provides what it calls ‘training,’ or, more specifically, a night or perhaps two in what’s known as the Graduate Nursery, so-named because all the parties involved — the patient, parents, and siblings — are in essence graduating and moving on from this trying phase of their lives.

This comprehensive training is carried out to enable to parents to effectively care for their child, taking charge of medication and equipment (some children go home on oxygen or monitors, for example), and providing all other forms of care. After getting this training, parents will spend a night or perhaps two with the baby in the so-called ‘sleep room’ inside the nursery.

“It’s a way for them to reinforce that they are, indeed, ready, and for us to really assess that as well,” she said, borrowing the phrase “dress rehearsal” to describe the overnights.

In hindsight, she said, many of those who become what some call ‘NICU parents’ are glad they had the experience, because it provides an intense, yet needed form of parental training that most don’t have when they arrive back home with their babies. Their attitude is much different, of course, when they’re living through those moments.

Birth of a Notion

At each of the NICU’s pods is a cluster of photographs of parents holding young, healthy babies, all of whom were patients in that same pod a year or two earlier.

“These photos are there to give them [parents] hope that they will able to do the same thing a year later,” said Chamberlain, adding that this is one of many traditions in the unit and yet another means of providing support.

There is seemingly no shortage of hope in this unique facility, a place where science and compassionate care come together to help families get to the top of the stairs together.

The proof is on display every June, at the graduation party, but it really comes every day.