The NICU: A Life in Between

HELEN Journal’s Cover Story:

Walk into any neonatal intensive care unit and you'll witness something extraordinary: strangers caring for the most vulnerable members of our community with a devotion that transcends profession. It's this profound humanity, so often hidden behind hospital doors, that inspired our project, The NICU: A Life in Between. Through the lens of photographer Rick Guidotti from Positive Exposure, we set out to capture what families and healthcare workers experience every day in the NICU: not just medical miracles, but moments of resilience, connection, and hope.

The question that drove us was simple: How do we show people what the NICU truly represents? How do we reveal the extraordinary dedication of environmental services staff who understand that cleanliness means lower infection rates for fragile babies? How do we honor the clinical pharmacists who triple-check minuscule medication doses, knowing that precision saves lives? How do we capture the nurses who comfort parents through their darkest hours, or the siblings who visit their baby brothers and sisters through isolette windows?

Photography became our answer. Working with Rick Guidotti, whose career has been dedicated to revealing beauty and dignity in populations too often defined by their medical challenges, we launched The NICU: A Life in Between at University Hospital in Davie, Florida. Rick photographed everyone: nurses, doctors, pharmacists, janitors, clerks, but most important, parents, babies, siblings, and the moments of love and bonding that transform a clinical space into something more like family.

The photographs tell a story that statistics alone cannot. They capture mothers gazing at babies who weigh less than a bag of sugar, fathers learning to change diapers through porthole openings, and healthcare workers celebrating the small victories that mark a preemie's journey home. Rick's unique vision revealed something my colleagues Dr. Barbeau, Dr. Toms, and I had discussed countless times: the NICU isn't just another intensive care unit. It's a place where people from vastly different backgrounds unite seamlessly around a single purpose: helping a child thrive.

“THE NICU: A LIFE IN BETWEEN IS A PROJECT THAT WAS CREATED BY RUNE, DAPHNA, BEN AND RICK. COMBINING THEIR SHARED EXPERIENCES IN PHOTOGRAPHY AND NEONATOLOGY LED TO THE BIRTH OF THIS ENDEAVOR. THE NICU: A LIFE IN BETWEEN AT UNIVERSITY HOSPITAL WAS LAUNCHED IN DAVIE, FLORIDA.”

Understanding the NICU Journey

To appreciate what these photographs capture, it helps to understand the journey that brings families to the NICU. When parents describe their experience after delivering at 23 weeks of gestation, they encounter a universal reaction: disbelief. While most families spend two to three days in the hospital after birth, some NICU babies remain hospitalized for four months or longer. The idea seems inconceivable until it happens to you.

The progress in neonatal medicine has been nothing short of remarkable. When the first neonatal intensive care units opened in the 1960s, caring for infants born at 34 weeks of gestation posed enormous challenges. The death of President Kennedy's son Patrick in 1963 at 34 weeks serves as a sobering reminder of those limitations. Today, "late preterm" infants born at 34 weeks have survival rates approaching one hundred percent. Even more impressively, advances in care have pushed the edge of viability to 23 weeks of gestation, with survival rates for these extremely premature infants now exceeding sixty percent at high-acuity centers.

These outcomes represent a testament to medical innovation and our society's commitment to its most vulnerable members. Yet they come with a reality that doesn't appear in survival statistics: the profound emotional toll on families.

The Hidden Trauma of NICU Life

Recent research reveals what clinicians have long observed: NICU parents experience psychological trauma at alarming rates. A study by Kara Hansen in Seminars in Perinatology found that 40 to 50% of NICU parents experience clinically significant depression, anxiety, or trauma-related symptoms, double the rate of the general postpartum population.

The trauma begins immediately. As Mary Coughlin, a pioneer in trauma-informed care, explains, the separation of mother and baby immediately after birth represents a "catastrophic event" for newborns. While the mother recovers in labor and delivery, her baby is rushed to the NICU, severing the primary sensory environment of safety and connectedness. This abrupt separation activates the newborn's stress response, potentially affecting sleep patterns and development.

For parents, the trauma layers multiply: the fear of medical instability, the specter of infections and respiratory distress, the uncertainty about long-term outcomes. Then there's the absence of normal: returning home each night to a house missing the child who should be there. The contrast between other people's birth announcements and your own daily hospital visits. The strange reality of becoming a parent before your baby can come home.

In the United States, this trauma intersects with economic injustice in painful ways. Long NICU stays often force parents back to work before their child's discharge, driven by the need to maintain health insurance to cover staggering medical bills. Sarah DiGregorio, author of Early and parent to a former 28-week baby, articulated this tension powerfully: "It's a deep injustice that the way our healthcare system works in this country means one parent usually has to leave the NICU to keep health insurance or a paycheck. This pulls families apart at a critical time, often leaving the gestational parent and child alone, and creates difficult dynamics and emotional struggles. Without paid family leave and universal health care, there's always something forcing parents out of the NICU."

Shifting the Narrative

Our project emerged from a conviction that the prevailing narrative about NICU babies needed to shift. These infants are routinely described as "very sick" or "critically ill," but the reality is more nuanced. Premature babies aren't sick; they're simply born earlier than expected. And they possess extraordinary resilience. They endure invasive procedures, weeks or months of hospitalization, and consistently amaze their care teams by pulling through and thriving.

We wanted families to see their babies differently: not as fragile beings barely clinging to survival, but as resilient fighters moving toward thriving. Rick's photographs achieve this transformation. They reveal the strength in a tiny hand gripping a parent's finger, the determination in eyes that shouldn't yet be open to the world, the trust between a nurse and a baby she's cared for across midnight shifts and morning rounds.

A Beacon of Hope

In an era when news cycles amplify division and discord, the NICU stands as a counterpoint, a reminder of what humans can accomplish when we work together toward a shared purpose. Consider what happens during a high-risk delivery: families place their most precious child into the hands of strangers who happen to be on call that day. There's no time for research, no careful vetting of credentials or reviews. These aren't physicians parents selected; they're whoever the clock and calendar determined would be there.

Yet it works. It works because of people who make the sacrifice of being on call on nights, weekends, and holidays to help members of their community through difficult times. It works because of the collective commitment across disciplines and roles. This reality feels almost countercultural in our increasingly individualistic society, and it's precisely what makes it worth celebrating.

Growing the Vision

The photographs from our initial shoot at University Hospital have traveled from the United States to Europe and now live on the project website at www.aniculife.org.  But our vision extends beyond a single institution. We believe the humanity and love on display in our NICU isn't unique to us; it's universal, present in neonatal units around the world.

That's why we're inviting other NICUs to bring photography into their midst as a catalyst for highlighting their own stories. The project lead has recently been awarded to Dr. Theodore Uzamere, a neonatologist in Texas whose deep commitment to supporting families through their NICU journey made him the ideal person to carry this vision forward. His passion for the family experience and his understanding of the profound emotional needs of NICU parents align perfectly with our mission to shift the narrative from vulnerability to resilience. Many other units across the country have also expressed interest in participating. Our goal is to showcase more institutions on our website and eventually create a tangible work product, perhaps a book, that can be gifted to families and providers as a memento of the values they embody and the journeys they've shared.

The Space Between

The title A Life in Between captures something essential about the NICU experience. These babies exist in a liminal space: neither in the womb nor fully in the world, not quite patients but not yet simply children at home. Their parents inhabit a similar in-between: celebrating birth while mourning the pregnancy cut short, feeling grateful for each day of progress while grieving the "normal" newborn experience they'd imagined.

But "in between" also describes something else: the space that opens when strangers become something like family, when a clinical environment transforms into a place of love, when medical care transcends treatment to become true healing. That's the space Rick's photographs illuminate, and that's what we hope to share with the world.

In the end, The NICU: A Life in Between is about making visible what has always been there: the beauty, resilience, and profound humanity that emerge when we commit ourselves fully to caring for the most vulnerable among us. These photographs don't just document the NICU experience; they honor it, and everyone who lives it.