A New Era of Mental Health Care for NICU Parents

Traditionally, neonatal intensive care units (NICUs) are laser-focused on helping the smallest and most critically ill babies recover. While that’s always the primary goal, a handful of forward-thinking hospitals have embraced a family-focused approach to care that also includes the parents’ mental health and well-being.

When a baby is critically ill and in the NICU, the stress on parents can be unrelenting and can last for months. Typical stresses include a traumatic birth, the shock of learning about a baby’s fragile health, dealing with ongoing medical crises, surgeries, and grappling with a possible future prognosis and uncertainty. For Collette and Alex Tabone, their NICU experience encompassed all of these things.

A whirlwind 72 hours

After Collette went into preterm labor unexpectedly, she and her husband, Alex, were thrown into a whirlwind 72 hours. Their daughter, Austen, was born weighing just 2.6 pounds at Dominican Hospital in Santa Cruz. She was immediately admitted to Dominican’s NICU, which is staffed by a Stanford Medicine Children’s Health care team. The Tabones were shocked to learn that Austen had a tracheoesophageal fistula (TEF), which meant that her esophagus wasn’t connected and that its bottom half was connected to her airway. They were told that she’d need surgery as soon as possible and would be transferred to Stanford Children’s Health’s Level IV NICU that day.

The next morning, a scan of Austen’s heart found that she also had a very serious congenital heart defect called tetralogy of Fallot with pulmonary atresia, and the couple learned that this condition would complicate the surgery she needed on her airway. On top of these frightening diagnoses was the minute-by-minute experience of watching the NICU team simply try to keep tiny Austen—bundled in wires and tubes in an incubator—alive.

“I had prepared myself for every kind of birthing scenario—except for the one where it’s 72 hours of bad news, where my baby isn’t healthy, and where I become a full-time NICU parent,” says Collette. As the adrenaline wore off, the emotional toll set in. “We were dealing with a lot of fear, shock, and an overall lack of trust that anything good was going to happen … just waiting for the other shoe to drop,” she says. In addition to fear and stress, Collette started having a lot of misplaced guilt. Alex, who works as a park ranger and EMT, struggled with feelings of inadequacy around not being able save his baby himself, and he started to have intense nightmares and mood swings.

Caring for a NICU baby means caring for the parents

Having a baby who’s sick and in the hospital is something many parents experience as traumatic, according to Celeste Poe, PhD, NICU attending psychologist and director of the NICU Psychology Program at Stanford Children’s. “With more research, we understand the short- and long-term effects of a NICU stay on parents, how that affects their relationship with their baby, and the negative long-term outcomes that can mean for the baby,” she says.

That’s why Stanford Medicine Children’s Health’s NICU has become a pioneer in supporting NICU parents with a continuum of mental health support. A social worker meets with every family whose baby is in the Stanford Children’s NICU. The social worker may continue to work directly with the parents during the hospitalization. Or the social worker might connect them to Dr. Poe for sessions rooted in trauma-focused cognitive behavioral therapy, as well as child-parent psychotherapy, which is a specialized intervention to strengthen parent-baby attachment. The topics covered during therapy depend on a few factors, such as how long the baby is expected to be in the hospital and how often the family wants to have sessions. Some parents have therapy individually as well as the sessions they share together.

“Some of the biggest gifts we can give parents in this situation are to normalize it, give them the space to acknowledge how hard it is, and connect them to resources,” says Dr. Poe. Usually, the trauma-focused interventions start with educating the parents about trauma, grief, and attachment, and then helping them process things that happened to their baby, while preparing for things to come. “There’s also room for deeper reflection too, like discussing what kinds of parents they want to be; and we always make sure they’re able to be engaged and interacting with the baby.”

A couple’s journey

Collette and Alex first met with social worker Emily Perez, MSW, LCSW. “Emily was a guardian angel to us,” says Collette. Perez helped them with everything from getting rooms at the hospital to sleep in to filling out forms for work. “Anytime she came to visit us, she’d take the time to ask how we were doing and really listen.” Perez connected the couple with Dr. Poe for additional support. “She knew we were in good hands with Dr. Poe and always checked in on us to see if we needed anything,” says Collette.

During the 103 days of Austen’s hospital stay, Collette and Alex regularly met with Dr. Poe, both together and separately. “Dr. Poe was really good about normalizing everything, telling us that the way we felt made a lot of sense and that we weren’t the first people to experience all of this,” says Collette. Dr. Poe worked with Collette around her overwhelming feelings of guilt. “She helped pull me out of my shame spiraling and guided me through what I could do to pull myself out of it,” Collette remembers.

Dr. Poe also worked with Collette on ways to manage her fear about Austen’s health and their family’s future. “Things like the looming surgeries and wondering if they’d kill my child and wondering what all of our lives would be like after all of this,” says Collette. Dr. Poe also helped the couple manage the changes in their relationships—with each other as well as with friends and family—that happened as a result of Austen being so ill and their lives being so abruptly upended. “You’re suddenly navigating not just your feelings and fears, but other people’s too,” says Collette.

“This couple was so special to me, and I loved working with them,” says Dr. Poe. “When a family has a baby in the NICU, it’s one of the most vulnerable times in their lives, and even talking to a stranger like me is a big ask. But from the beginning, this couple was so engaged and open to self-reflection that it gave me insight into how to best help them.”

Therapy, along with assurance from the surgical team, helped Collette and Alex to better cope with their daughter’s airway surgery. “The combination of complex congenital heart disease and TEF made Austen’s situation unusual and much more complex, and the history of prematurity added yet another layer,” says otolaryngologist and surgeon-in-chief Karthik Balakrishnan, MD. “Fortunately, our airway team has extensive experience with premature infants, complex heart patients, and TEF/EA [tracheoesophageal fistula and esophageal atresia] patients, as well as patients with the combination.”

After the airway surgery, therapy helped the couple focus on bonding with Austen as she slowly got strong enough for cardiac surgery. Austen’s neonatologist, Anoop Rao, MD, took note of how well the couple was managing as they juggled their jobs and the ups and downs of life in the NICU. Despite rocky days, “they were nevertheless laser-focused on providing the best they could for their child,” says Dr. Rao.

Support from the whole team

Many clinicians assisted Collette and Alex emotionally by taking the time to help them understand what was happening medically. “From the moment we arrived, we were treated with tenderness, compassion, and care,” says Collette. For example, “as we learned about Austen’s heart condition, there was always a cardiac team member ready to come by and explain it once more.”

Austen’s cardiac surgeon, Elisabeth Martin, MD, made sure that the Tabones were clear about Austen’s situation by being transparent about expectations. “I tell parents the facts, explaining how things will look step-by-step to avoid surprises, and I explain how we’ll navigate through challenges that come up,” she says. Collette appreciated Dr. Martin’s ability to give a lot of details about the heart surgery while getting straight to the point: explaining where Austen would go in the hospital, saying which teams would see her, and being upfront about how long she’d be in surgery and what recovery would look like in the Cardiovascular Intensive Care Unit. “Dr. Martin told us that Austen had ‘purchased a lifetime membership to the Cardiology Club.’ This was the first time I sat back and considered the number of appointments, and follow-ups, and surgeries she would need to have in the future.”

Arriving home—and in a better mental health place

Collette and Alex continued to work through this realization with Dr. Poe even after they took Austen home from the hospital. “Having her talk with us as we transitioned into home life was extremely beneficial because she knew about Austen’s history and was there with us so she could provide that continuation of care,” says Collette.

One area of focus of their outpatient sessions was dealing with anxiety. “Anxiety can follow parents home from the hospital and can impact the way they raise their child,” says Dr. Poe. It’s common, for example, for parents caring for a medically complex child to become overly protective and inadvertently limit what their child is allowed to do as they grow older. In total, Dr. Poe worked with the Tabones for 28 sessions over a period of about eight months. “It’s rewarding not only to get to be a witness alongside them on this really difficult journey,” says Dr. Poe. “Seeing what they can overcome for the sake of their child is so beautiful.” Now that Austen is almost a year old, Collette can step back and appreciate how important it was for her and her husband to get the mental health support that they did and how it helped them through that time. “Alex and I wouldn’t have done so well at communicating with each other without it,” she says. “And I think that navigating the feelings of isolation would have felt insurmountable. It’s hard to reach out and hard to accept help and support, so having it so accessible and available was everything. Navigating the really big feelings—guilt, anxiety, fear, isolation—I think we’d still be in it, and in a lot darker place.”