At the NICU, caring for parents’ mental health
makes a life-changing
difference

A nurse explained that she was going to perform a cervical exam on Collette, starting with a swab to check for a bacterial infection. “As she went to grab the swab, she was like, ‘Oh, I don't need that. You're in preterm labor,’” Collette said. “And then everything went upside down.”

Ten weeks before her due date, Collette gave birth to a baby girl, Austen, weighing just 2.6 pounds. A few hours later, Collette and Alex found out that Austen had a life-threatening birth defect called a tracheoesophageal fistula. They were told that Austen’s esophagus wasn’t properly connected, and that she would need to have surgery as soon as possible. That same day, Austen was transferred to the nationally recognized Level IV neonatal intensive care unit (NICU) at Lucile Packard Children’s Hospital Stanford, the center of the Stanford Medicine Children’s Health network.”

The next morning, Collette and Alex received another frightening diagnosis: Austen had a serious congenital heart defect called Tetralogy of Fallot with pulmonary atresia. It would complicate the surgery she needed for her esophagus, the doctors explained, and require a second surgery once Austen finally recovered from her first one. The Tabones were in good hands — as one of the leading pediatric heart centers in the nation, the Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health excels at repairing the most challenging heart defects, including Tetralogy of Fallot, using a treatment pioneered by one of its heart surgeons — and yet they couldn’t help feeling like things were spiraling out of control.

“It was 72 hours of news getting worse and worse,” Alex said. “To me, it felt like being at the edge of the ocean. It's one wave after another wave after another wave, and it's hard to catch your breath.”

The team at Stanford Children’s knew they had two jobs to do. One was to save Austen’s life. The other was to save Collette and Alex from despair.

Stanford Children’s takes a pioneering, family-focused approach to its work in the NICU. Along with providing life-saving medical care for newborns, the hospital also provides life-changing mental health resources for new parents struggling to cope with the trauma of having a child in the NICU.

“Parents often describe this time as the most difficult thing that they've ever been through,” said Dr. Celeste Poe, the director of the NICU Psychology Program at Stanford Medicine Children’s Health. “If we know that this is likely to put them at risk for increased mental health symptoms, it's really important that we're giving them support as early as possible.”

Within the Tabones’ first 24 hours at Stanford Children’s, they were introduced to social worker Emily Perez, who sat down with them and helped them unpack everything they had been through over the past three days. She also explained that, for however long they might wind up staying in the NICU, she’d be there to help them, every step of the way.

“Every family who has a child admitted to our NICU automatically gets a social worker,” Perez said. “The way we explain our role to families is, the medical team is here to take exceptional care of their baby — and we're here to take exceptional care of the whole family unit. We recognize that this is probably one of the hardest moments in their lives, and we're here to help guide and support them along their baby's NICU journey.”

Perez quickly found rooms at the hospital where Collette and Alex could spend the night. She gave them vouchers for food at the cafeteria so they could get something to eat. She served as a bridge between them and the medical team, helping the couple get answers to any questions they had. And she introduced them to Dr. Poe, explaining that, if they wanted to, they could see her for counseling. The Tabones, who were struggling to deal with a whirlwind of emotions, immediately signed up.

“Dr. Poe was just incredible from day one,” Collette said. “The first thing that she did was normalize all of the things that we were feeling. She was like, ‘All of the emotions and feelings and fears that you're describing to me are absolutely normal in this kind of environment, and you are not the first parents to feel these types of feelings by any means.’ It was just huge.”

The Tabones continued to meet regularly with Perez and Dr. Poe throughout their time at the NICU, where Austen received what Collette called “the best of the best” care from Stanford Children’s industry-leading, nationally ranked teams of clinicians in neonatology, pediatric cardiology, and beyond. As the weeks went on, the Tabones faced new challenges every day — but Perez and Dr. Poe were a constant, comforting presence, they said, there to help them overcome everything they were going through.

“Emily would check in with us so often, and she just did it in such a genuine and caring way: she would sit and she would talk to Austen, and she would talk to us, and make eye contact — it was just amazing,” Collette said. “And Dr. Poe was just so good at helping us navigate the emotions.”

Collette and Alex met with Dr. Poe both together and separately, giving them space to talk not just about their shared fears, feelings and struggles, but about their individual emotions as well. That one-on-one care was hugely helpful for the couple, Collette said.

“Being able to navigate how we were dealing with our own fears and trauma responses as well as how we were doing that together was really important,” Collette said. “I feel that Alex and I would not have been as good together without Dr. Poe's guidance and nurturing. And I think I would've gone through much bigger and deeper spirals.”

All told, Collette, Alex and Austen spent 103 days in the NICU. Over time, their neonatologist, Dr. Anoop Rao, noticed that they were making strides in their ability to cope with everything that was happening — something he attributed to their work with Perez and Dr. Poe.

“They went through tons of ups and downs,” Dr. Rao said. “But each step of the way, they were trying to deal with the challenge. They were processing things. In hindsight, I can clearly see that so much of it was probably because of the support that they were being provided by Dr. Poe and the team.”

Stanford Children’s continued to work with the Tabones even after they left the hospital. Dr. Poe kept seeing the couple for outpatient therapy sessions — meeting with them 28 times over the course of about eight months — which gave them invaluable support in transitioning to home life, all with a clinician who had been with them from the start and knew their story.

“There's this idea that once your child graduates from a hospital, everything's simply positive. But often it's actually pretty rare that parents feel only a sense of joy,” Dr. Poe said. “To have someone who has witnessed the difficulties, the ups and downs, who knows what it took to get you to this point — to have them continue to support you I think is so important.”

It’s been about a year since the Tabones checked out of Stanford Children’s. Looking back, Collette said, she doesn’t know how she and Alex would’ve gotten through the experience without the kind of extensive, built-in mental health support the hospital was able to offer them — an unprecedented approach to NICU care found in few children’s hospitals.

“I think that navigating the feelings of isolation would have felt insurmountable,” Collette said. “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.”