Through the Prism With RN Erica Lui and Dr. Christiana Farkouh-Karoleski

Nearly one year since the COVID-19 pandemic radically changed the lives of health care workers, we spoke with RN Erica Lui, a nurture specialist and Dr. Christiana Farkouh-Karoleski, a neonatologist at The Valley Hospital in Ridgewood, NJ. We invited them to share with us how human connection has shaped their experience of this challenging time.

What is one of your earliest memories of the power of human connection?

“My instinct was to talk about family,” Erica said, “but the truth is my mom worked 10-12 hour days 364 days a year at a restaurant she owned, and my dad worked his day job and afterward would help my mom at the restaurant until it closed.” The transition to public school was difficult: “My parents had only spoken Chinese to me growing up, which, when I entered kindergarten, made me feel really alienated. Through my ESL classes, I met Sayako, a Japanese girl whose parents were stationed in the US. She and I became really close friends. Sayako was my only friend in elementary school, but her friendship was enough to be a bright light in a dark world. I got to feel how just one person understanding you and caring for you makes such a difference. And that guides what I feel and do in my work now, because I want the families I work with to feel that way.”

“I didn’t know that about you, Erica,” Christiana said. “It’s interesting because I’m also the daughter of immigrants who spent a lot of time working for their children to have a better life, and a lot of my friends were young people who were themselves either immigrant or first-generation.” Christiana also wanted to speak of family, but ultimately also found her moments of early emotional connection in school. “I remember distinctly one teacher who recognized me as a smart little girl who was too introverted to stand on her own, who would pull me aside and tell me, ‘This is great work.’ That helped me realize, ‘Wow, I can do this.’”

What values guide your work?

“The core value behind my work,” said Erica, “is actionable love. It’s the difference between feeling love for a person and loving someone through your actions.” It’s often easier, Erica says, to offer a person positivity to try to help them, but that’s not always what they need. “Sometimes I have to immerse myself in the grief and suffering that someone I’m supporting is going through. Just telling them I was there for them—not things to do, or reasons they should feel better—but being with them in this really painful time.” Just as Erica felt comforted by Sayako in her early days of elementary school, Erica knows how important it is to not feel alone. “If someone feels like there’s even just one person accompanying them,” she says, “they can get through anything.”

What are you working on right now?

For the past two years, Erica and Christiana have been working to embed the Nurture Science Program’s Family Nurture Care methodology in their NICU protocol at The Valley Hospital. The hospital helps deliver more than 3,500 babies per year, 350 of whom wind up in the NICU.

Erica describes Family Nurture Care: “When mom is pregnant,” she said, “mom and baby are one. But now that baby is born, they are separate, especially in the NICU. Guiding mom and baby through reconnecting, by emotionally expressing to each other while engaging with each other’s senses, is something we have known is important, but it got lost in the technology-driven world we live in.”

Christiana confirms the challenge of helping health care providers understand the importance of emotional connection. “For the first half of my career,” Christiana says, “I didn’t really appreciate the importance of emotional connection. I assumed that if the medical course and all the tests and studies were good then we were okay.”

But that wasn’t always true. Christiana described a memorable meeting with the parents of twins who had had an exceptionally good NICU experience a few months after their discharge. Christiana observed that the father was in a clear state of distress. “He said it was the first time they’d been back in the hospital. I remember thinking they had been the ideal patients, but in this moment I realized dad hadn’t processed a lot of the feelings that he had about his infant children being in critical care.” Christiana suddenly saw clearly that infant health was only part of the early childhood health equation. “It took learning about Family Nurture Care to start to appreciate why this is so important. Unless you see it for yourself, it’s hard for people who are so data and evidence oriented to appreciate how vital this is. That’s why the Nurture Science Program is so important, it provides the evidence to demonstrate the power of human connection.”

Erica had a similar realization in her transition from a staff nurse to a nurture specialist. “As a staff nurse,” Erica said, “I had hardly any experience with families after they left the NICU. I assumed that if we got news that the baby was healthy, all was well and good. Speaking with parents from the time before we had Family Nurture Care in the unit, I realized the parents were not ok because we hadn’t worked through their difficult feelings, and that affects the parents and the baby.”

“When I went fully into this role as a nurture specialist, it was so different from being a bedside clinical nurse. I used to use a lot of bandaid statements. I’d tell them anything to help them not feel sad or guilty being away from their baby, anything to convince them it wasn’t their fault that their baby was in the NICU. Selfishly, I couldn’t help but try to comfort them by saying anything to help them feel better.”

“Through the Nurture Science Program,” Erica explains, “I learned that the healing force is to let someone who’s hurting express what’s hurting them. When I started embracing that as a nurture specialist, it took away the burden of trying to find the right thing to say when people are pouring their soul out to you. A lot of the time, I don’t need to say anything: I just need to be fully present, actively listening, and just being there--maybe to tell them it’s okay to feel what they’re feeling, and remind them they are not alone in how they’re feeling, that I am on the journey with them through this painful time.”

“We have this amazing program of care we can’t wait to spread,” Erica said. “It feels like we have a secret of what really is important. Family Nurture Care is emotionally and relationally supporting families so they can restore the emotional connection that is lost, especially in the NICU. We can’t wait to help bring this approach to other health care systems.”

How has the experience of the last year affected you and your work?

“We had finally fully embedded Family Nurture Care in our unit literally the week that the pandemic exploded and everything went into lockdown,” Christiana remembers. “It was very hard in the beginning to see this transition in the unit, from supporting not just the care team but the families, and then it all went away, like a light switch turned off. Seeing such a stark 180 degree switch makes you appreciate how important that aspect of the care is.”

Erica’s job had shifted suddenly from being physically with parents to support them through their infants being in critical care. Now the vital support she was meant to provide was, like everything else, relegated to Zoom.

“I was trying to support our NICU parents virtually through Zoom calls, phone calls, however I could get them to talk to me,” Erica remembered, “but they didn’t have a face to put with my voice, they had no idea who I was. At best, I would get one conversation in with the parents, and then trying to show something from my work from home, I would be contacting them to try to follow up but I didn’t feel like they wanted to follow up with me. How can someone they’ve never met understand what they’re going through?”

In the early days of the pandemic, new parents were trying to get out of the hospital in 24 hours to avoid the perceived risk of exposure. “We had a rise in re-admissions,” Christiana said. “It’s easy to control what happens in the hospital. But the isolation of new parents at home probably meant they weren’t getting the family support that would help them learn how to feed and nurture. Recognizing how important all of our supports are in our lives, how do we provide support at home?” Christiana wondered.

“The world was reeling, people were dying, people were afraid for themselves. We wanted to protect ourselves and the babies; we had no idea how the virus would affect newborns. We had to be restrictive, but we paid a huge price for that by alienating and isolating so many people. Suddenly nurture specialists and family supporters were out of the unit. Only one parent was permitted in the NICU for a period of time. At that point, I think I recognized how much we lost. Then we realized, this isn’t going away, so we had to find a middle ground. We created virtual support programs for our families and staff, and ultimately determined an in-person nurture specialist was essential.”

At the same time, Erica was going through her own personal struggle:

“Right at the start of the pandemic, I was thrown head first into a really traumatizing time when six of my family members were in the hospital and my aunt and grandfather had just passed away. We were all very healthy and had just gotten together a few weeks earlier for Christmas – we hadn’t even celebrated Chinese New Year yet. It started this cascade. Anyone who has experienced a family member getting sick with COVID has experienced this cascade. Am I sick? Have I gotten other people sick? It was terrible.”

Erica, who had never worked remotely, was also adjusting to working from home.

“I dreamed of my friends in tech and other industries who worked from home, and it seemed great. It was not great at all. I was trying to accommodate my 4-year-old daughter who had been in day care five days a week and was now home. I couldn’t accommodate her because I was working and when I was with her, I felt like I should have been working. I basically slept in two hour chunks, and found out I was awake and working at the same time as all the other moms, at 3am.”

Erica also felt a huge sense of guilt for not being with her hospital colleagues who were working long hours in difficult conditions. “I felt like a draft-dodger every time someone mentioned health care heroes. Being home while they were all working so hard made me feel terrible. But I was also paralyzed by the fear of the deaths that had affected my family. I couldn’t leave the house.”

“Preparing to go back to the hospital in July, I went to see a therapist at the encouragement of the hospital,” she recalls. “They said I had signs of PTSD that would resolve as I got used to going back to work. It made me feel even more alone and unheard: nobody knows what I’m going through, not even this licensed therapist. It was so unhelpful.”

Then a coworker at the hospital reached out to her. “Instead of getting the reaction I was expecting – that I was dodging responsibility, or lucky to be working from home – I was surprised to hear she was worried about me and my mental health. She kept checking in to see how my family was doing. When I shared with her that I was going back in July, she helped me mentally and physically prepare: she taught me how she decontaminates before going back into the home with her little one. I finally felt like I wasn’t alone in being afraid of getting sick, or getting my family sick. Knowing that my coworkers weren’t mad or resentful, gave me the strength to go back.

“Ironically,” Erica said, “what the therapist said was true. Going back did help. At first, I felt like I couldn’t breathe for a few weeks, but it got easier. Not only was I accompanied by my coworkers, but by the parents who are also suffering during this terrible time. Not being alone, seeing and being connected to people who were open about being just as scared as I was, was enough to get me through each day.”

What's giving you joy right now? What are you hopeful about?

“Happily, a lot of things bring me joy,” Christiana said, smiling. “I love our unit and the people I work with. Seeing Erica come back, as hard as it was for her (and I didn’t know at the time), I can’t express just how that helped, myself included. It brought that glimmer back to the unit: that things can get better. It was such a source of joy. That’s what makes our unit so special: people who really understand how important this is. My family also brings me great joy. And the amazing resilience we witness everyday. I’m hopeful that the positive lessons will endure.”

“The resilience of people has really been highlighted,” Erica said, “especially of my 4-year-old daughter, who shows such positivity every day.”

Erica takes the long view: “For every terrible thing that happens,” she said, “there is an equal and opposite reaction. While this pandemic has isolated us, we were already in a state of disconnection with all the things we were trying to do: the busy-ness of life had us in a disconnected rut. The pandemic put the brakes on that. My hope is that as life picks back up again, that we don’t lose that feeling of what’s truly important to us in life, and we can continue being intentional about spending time caring for each other.”

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