Fighting for NICU babies and their families

During his early years as a neonatologist in the 1970s, Dr. Bob White recalls bassinets lined up along the walls of the newborn intensive care unit while nurses looked on like hawks.

Babies were prodded regularly for tests and treatments. Doctors rushed in to the sound of alarms, scaring not just the family whose baby was in distress, but any family looking on. Though normal at the time, even then White knew things needed to change.

“It was kind of a culture shock to walk into that. Even as a medical person, I was immediately overwhelmed by sights and the noise and the bright lights. So it didn’t take me long to figure out this wasn’t the ideal environment for babies to be healing,” he remembered.

“The other piece that was starkly obvious was the absence of families. Back then, we had these preconceived notions that families would bring in germs that would be dangerous to babies—bacteria of various sorts—so we shouldn’t let them touch them.”

Breast milk, too, was taboo in the NICU, he recalled.

“We’ve gone 180 degrees on all of those!” he laughed.

In a 2009 neonatal intensive care unit (NICU), a nurse in blue scrubs gently hands a swaddled newborn to its seated mother. The baby is wrapped in a white blanket. An incubator is visible in the background. — Change didn’t happen all at once. Before couplet care rooms were introduced in 2017, the NICU at Memorial Hospital, now Beacon Children’s Hospital, looked like this. (Photo from 2009 by Peter Ringenberg)

But change didn’t happen overnight.

White received his undergraduate degree from Notre Dame in 1971. After medical school at Johns Hopkins and a stint in Niles, Michigan, White returned to South Bend as a neonatologist hired to create a NICU at what is now Beacon Children’s Hospital. It occurred to him that some of the concerning concepts he had observed in NICUs could be studied and quantified, so he reached out to Notre Dame psychology professor Tom Whitman to begin a partnership with the Department of Psychology. White became adjunct faculty and has remained a beloved instructor for 34 years.

Notre Dame Researchers

The many leaps in better NICU care are thanks in part to a number of Notre Dame researchers. They include:

A white woman with short, gray, curly hair and red-rimmed glasses. She smiles warmly while wearing an emerald green blazer over an emerald top. A teardrop-shaped green pendant necklace hangs around her neck. A blurred background hints at an outdoor setting.

Kathleen Kolberg

Associate dean, College of Science
Kolberg has long assisted with the NICU standards as an administrator, and her research on environmental stressors for prenatal and early postnatal development has helped shape many of the recommendations.

A white man with short gray hair and glasses, wearing a light brown and white plaid shirt.

Tom Whitman

Professor emeritus, Department of Psychology
Whitman facilitated the collaborative research efforts between Notre Dame and Beacon and helped create the Psychology and Medicine course.

A white man with light brown hair and glasses, wearing a white collared shirt and patterned tie. He is smiling at the camera against a plain gray background.

Jim McKenna

Faculty emeritus, Department of Anthropology
McKenna, a world-renowned expert on infant sleep, founded the Mother-Baby Behavioral Sleep Laboratory to study infant sleep, mother-baby co-sleeping, breastfeeding, and risk factors for SIDS. His work was instrumental in proving the importance of private family rooms in NICUs to facilitate bonding.

A white man with short brown hair, smiling, wearing a gray and green plaid button-down shirt. He is positioned in front of a bookshelf slightly out of focus.

Lee Gettler

Professor and chair, Department of Anthropology
Gettler is the director of the Hormones, Health, and Human Behavior Lab where he focuses on men’s hormone physiology responses to life transitions, including fatherhood. He has also continued McKenna’s research on co-sleeping, especially as it pertains to the role of fathers.

A white man with short gray hair and glasses. He wears a dark suit jacket, white shirt, and purple patterned tie. A small, round Notre Dame pin is affixed to his lapel.

Dominic Vachon

The John G. Sheedy, M.D., Director of Notre Dame’s Ruth M. Hillebrand Center for Compassionate Care in Medicine
Vachon is a practicing psychologist whose specialty is in the relationship between empathy and burnout in medical providers and helping professions. He has also advised Beacon’s NICU team in a compassionate care approach.

One of the first things they studied was the lighting. Now the director of the regional newborn program at Beacon, White recalled NICUs had few, if any, windows and little natural light. Fluorescent lights remained on 24/7. What’s more, hospital code prevented putting cribs too near the windows for fear of the fragile babies catching cold and losing energy.

“The first thing we did was to determine whether or not babies would do better if you gave them a daylight cycle. So our room had big skylights which gave them natural lighting during the day and then turned the lights down at night. Then we conducted a randomized, controlled trial which showed that babies did do better if they had a circadian rhythm,” he said. “What we didn’t study, but was also equally obvious, was that all the staff and all the families loved it.”

White explained that the trial’s results showed that babies given cycled light saw increased weight gain, spent fewer days on a ventilator, and started oral feedings sooner. They were also discharged several days earlier than babies kept in a continuous environment of bright lighting.

Based on these results, the team set out to change the codes to encourage natural light, or at least cycled light, in NICUs. To do so, they put together a committee of experts including architects, hospital administrators, and researchers such as Kathleen Kolberg, now an associate dean in the College of Science, and published the data on their research.

The NICU unit at Beacon Children’s Hospital features amenities that promote close physical contact between premature babies and their parents. Missing from this photo are the windows to the outside that provide natural light that helps babies maintain circadian rhythms, and the pullout sofa sleeper that provides space for two people.

That once-small committee grew and grew. Now it’s a large professional group including neonatologists, parents, nurses, doctors, architects, hospital planners, and basic scientists with specialties in lighting, sound, sociology, and more. Institutions including Cornell, Baylor, Ohio State, and University of Colorado contribute, as do international groups. Together, they systematically review the best practices of how to build and run NICUs.

Since 1992, this multidisciplinary team has translated those requests into actionable items for NICU design. The result is the Recommended Standards for Newborn Intensive Care Unit Design, which recently released its 10th edition. These standards are disseminated internationally and influence the design of NICUs worldwide.

“We were not just saying this would be a nice thing to do. There was evidence that this gives better outcomes.”

Dr. Bob White

White and Kolberg also help lead an annual conference, now called the Gravens Conference, which is in its 38th year. The conference welcomes medical professionals, researchers, hospital administrators, families, architects, and others to an annual conference to discuss best practices in NICU settings.

Together, the groups have advocated for private rooms for NICU families, as well as couplet care rooms where mothers can receive their postpartum care alongside their newborn. In 2017, Beacon became the first US hospital to install those rooms. The group has shown the efficacy of breast milk and the importance of parent bonding in a baby’s earliest days. Their recommendations cover everything from appropriate signage to acoustics, furnishings to handwashing. No detail seems too small.

Jay and Elizabeth Tipton have experienced the improved NICU firsthand. Their twin boys, Alexander and Benjamin, spent nine days in Beacon’s NICU after being born at 35 weeks and three days. There, the boys worked on stabilizing their temperature and blood sugar before they could go home to join their older siblings.

As they were ushered into a private suite, Jay, a nurse in the hospital’s surgery department, was wowed by how intentional the room design was. He recalled being impressed by the silent alarms that would ping a nurse’s phone rather than setting off a startling alarm in the room, and by how medical equipment was strategically masqueraded to reduce stress levels. Even details like large windows seemed novel, but purposeful, in a hospital setting.

Ese comité, que alguna vez fue pequeño, creció y creció. Ahora es un gran grupo profesional que incluye neonatólogos, padres, enfermeras, médicos, arquitectos, planificadores de hospitales y científicos básicos con especialidades en iluminación, sonido, sociología, entre otras. Contribuyen instituciones como Cornell, Baylor, Ohio State y la Universidad de Colorado, así como grupos internacionales. Juntos, revisan sistemáticamente las mejores prácticas sobre cómo construir y gestionar las UCIN.

Desde 1992, este equipo multidisciplinario ha traducido esas solicitudes en elementos aprovechables para el diseño de las UCIN. El resultado son las Normas recomendadas para el diseño de unidades de cuidados intensivos neonatales, que recientemente lanzó su décima edición. Estas normas se difunden internacionalmente e influyen en el diseño de las UCIN en todo el mundo.

“No sólo dijimos que sería bueno hacer esto. “Hay evidencia de que esto da mejores resultados”.

Dr. Bob White

White y Kolberg también ayudan a dirigir una conferencia anual, ahora llamada Conferencia de Gravens, que se encuentra en su 38º año. La conferencia recibe a profesionales médicos, investigadores, administradores de hospitales, familias, arquitectos y otros interesados a una conferencia anual para discutir las mejores prácticas en entornos de UCIN.

Juntos, los grupos han abogado por habitaciones privadas para las familias de la UCIN, así como salas de cuidados conjuntos donde las madres pueden recibir su atención posparto junto con su recién nacido. En 2017, Beacon se convirtió en el primer hospital de EE. UU. en disponer de esas habitaciones. El grupo ha demostrado la eficacia de la leche materna y la importancia del vínculo con los padres en los primeros días de vida del bebé. Sus recomendaciones abarcan todo, desde la señalización adecuada hasta la acústica, el mobiliario y el lavado de manos. Ningún detalle parece demasiado pequeño.

Jay y Elizabeth Tipton experimentaron de primera mano la mejora de la UCIN. Sus hijos gemelos, Alexander y Benjamin, pasaron nueve días en la UCIN de Beacon después de nacer a las 35 semanas y tres días. Allí, los niños se enfocaron en estabilizar su temperatura y nivel de azúcar en sangre antes de poder regresar a casa para reunirse con sus hermanos mayores.

Cuando los condujeron a una suite privada, Jay, un enfermero del departamento de cirugía del hospital, quedó sorprendido por el diseño tan especializado de la habitación. Recordó que le impresionaron las alarmas silenciosas que hacían sonar un pequeño timbre en el teléfono de la enfermera en lugar de activar una alarma ruidosa en la habitación, y cómo el equipo médico estaba estratégicamente oculto para reducir los niveles de estrés. Incluso detalles como las ventanas grandes parecían novedosos, pero útiles, en un entorno hospitalario.

“[There were] great big windows allowing lots of natural sunlight to come in during the day and make it feel less like you’re in a hospital. I can’t tell you how much of a difference that makes,” Tipton said. He recalled watching a Midwestern storm roll in and being comforted by watching the outside world moving. “It reminds you that this tiny room isn’t all there is.”

Inside that tiny room can be stressful. Tipton said the boys needed nasogastric tubes that run from the nose to the stomach to supplement what they could take from a bottle. At first, the nurses handled those feedings, but in time, he grew to feel confident he could take over.

“The nurses really encouraged us to be involved in the care of our sons as much as we wanted to be. Whether it was feeding them or changing them or bathing them, they didn’t allow us to be paralyzed or sidelined by our uncertainty or any fear. They really encouraged us to take hold of parenting and giving care to our boys.

“The couplet care room concept provides an opportunity for you to start practicing what care is going to be like at home, even in the hospital setting with the support of the nursing staff. So it’s almost like having training wheels for when you bring your baby home. It’s an opportunity for you to practice and to learn and to be able to make sure that you are prepared for success and your baby’s prepared for success when you get home,” he said.

Thankfully, the Tipton boys remained in the NICU for only nine days before they were discharged, but Jay recalled that other families on the floor had been there much longer, turning their private rooms into an extension of their home. That was welcome, if not encouraged, he said, and made the experience more comfortable.

But what sticks with him now was the staff, especially Dr. White.

“The thing that sticks in my memory that I will never ever forget: He would come every single morning during rounds and he would be in the room as long as we needed to talk to us, let us know what our goals were for the day, answer our questions. And when he would leave, he would always sort of turn back and look as he was walking away and say, ‘It’s the best job in the world.’ And he really meant it. You could tell that was not just something that he was saying,” Tipton said. “You can’t quantify what that means as a patient to have a physician who is not only that invested, but one who has that much joy in what they do.”

“Había grandes ventanales que dejaban entrar mucha luz natural durante el día y hacían que uno no se sintiera como si estuviera en un hospital. "No puedo explicarles la gran diferencia que eso hace", dijo Tipton. Recordó haber visto una tormenta desatarse y sentirse reconfortado al ver todo el movimiento del mundo exterior. “Te recuerda que esta pequeña habitación no es todo lo que hay”.

El interior de esa pequeña habitación puede ser estresante. Los niños necesitaban sondas nasogástricas que van desde la nariz hasta el estómago para complementar lo que podían tomar del biberón, dijo Tipton. Al principio, las enfermeras se encargaban de la alimentación, pero con el tiempo, él empezó a sentirse seguro de que podía hacerse cargo.

“Las enfermeras realmente nos animaron a involucrarnos en el cuidado de nuestros hijos tanto como quisiéramos. Ya fuese para alimentarlos, cambiarlos o bañarlos, no permitieron que nos quedáramos pasmados o que nos hicieran a un lado por nuestra incertidumbre o miedos. Realmente nos animaron a hacernos cargo de la crianza y el cuidado de nuestros hijos.

“El concepto de sala de cuidados conjuntos ofrece una oportunidad para comenzar a practicar cómo será el cuidado en el hogar, incluso en el entorno hospitalario, con el apoyo del personal de enfermería. Así que es casi como tener rueditas de entrenamiento para cuando traes a tu bebé a casa. "Es una oportunidad para que practiques y aprendas y puedas asegurarte de que tanto tú como tu bebé están preparados para el éxito al llegar a casa", dijo.

Afortunadamente, los niños Tipton permanecieron en la UCIN solo nueve días antes de ser dados de alta, pero Jay recordó que otras familias en la unidad habían estado allí mucho más tiempo, convirtiendo sus habitaciones privadas en una extensión de su hogar. Eso era bienvenido, aunque no promovido, dijo, e hizo que la experiencia fuera más cómoda.

Pero lo que más le quedó grabado fue el personal, especialmente el Dr. White.

“Lo que quedó grabado en mi memoria y que nunca olvidaré: Él venía todas las mañanas durante las rondas y estaba en la habitación todo el tiempo que necesitáramos para hablar con nosotros, decirnos cuáles eran nuestros objetivos para el día y responder nuestras preguntas. Y cuando se iba, siempre se daba vuelta y miraba hacia otro lado diciendo: "Es el mejor trabajo del mundo". Y realmente lo decía en serio. Se notaba que no era algo que él simplemente decía”, dijo Tipton. “No se puede cuantificar lo que significa para un paciente tener un médico que no sólo está tan comprometido, sino que además siente tanta alegría por lo que hace”.

The atrium area of the NICU unit has a whimsical, indoor treehouse play area with light wood framing, flooring, and furniture. In the background, another tree sculpture and play area are visible through glass partitions. — The atrium inside Beacon Children's Hospital features big windows that allow lots of natural sunlight to come in during the day.

Educating Students on Compassionate Care

White is obviously passionate about these fragile NICU babies and their families, but what’s just as clear is his commitment to teaching the next generation of practitioners.

“One of the things that I realized very early on was that they hadn’t prepared me in medical school for much of everything about medicine that wasn’t science—like the social and environmental. And these sorts of things were nothing that we gained training in. And I thought that was really important, not just for people going into neonatology, but doctors in general,” White said.

White now works to fill that gap. As a clinical professor in the Compassionate Care in Medicine minor for future medical professionals in the College of Science, each spring he and Professor Kolberg teach Psychology and Medicine to undergraduates. The course covers topics such as physicians’ well-being, burnout, stress, and compassion. He also guest lectures in Kolberg’s Clinical Embryology course, and focuses on infant and family-centered care.

An white man with short white hair wears a light blue, red, and green plaid button-down shirt. He stands slightly angled to the right of the frame, looking pensively in that direction. Behind him, branches with yellow fall leaves are decorated with colorful ribbons. — Dr. Bob White stands in front of one of the ribbon trees at the neonatal intensive care unit at Beacon Children's Hospital in South Bend. Families put a ribbon on the tree when their baby is discharged from the NICU.

Back at the hospital, White invites students to volunteer in the NICU and to experience firsthand what parents experience. Conor Sheehan ’24 worked in the NICU for almost three years during his time at Notre Dame.

Sheehan, who worked at the reception desk, recalled: “Multiple times while answering [phone] calls, parents would call to thank one of the nurses or doctors who cared for their child. Many times this was years after their child was discharged. This always stuck with me when thinking about how great the team at the NICU is and how meaningful the work that they do is. From my perspective I saw how hard they worked and how much they cared about their patients through their commitment to their work.”

With hands-on experience, White’s tutelage, and ever-evolving research, the next generation of Notre Dame neonatologists will be well equipped to care for the fragile new lives in NICUs and the families who love them.

Fighting for NICU babies and their families

Para los bebés de la UCIN y sus familias