Having been a nurse practitioner for 11 years now, most of my experience in the health care system has been from the perspective of a provider. Even during my two pregnancies, I received care from a midwifery practice started by friends who graduated with me. For the most part I felt knowledgeable, in control, and treated as a peer. Then, in 2017, our beautiful adopted daughter was born emergently, two months early. I jumped on the first flight out of Atlanta with one bag and ended up spending the next month with my baby girl in the NICU.
Years of outpatient family practice experience meant nothing in the NICU. I was surrounded by machines I had no experience using with alarms to constantly remind me that the line between life and death is fragile in the NICU. I was just a mom completely reliant on the NICU providers to keep my baby girl alive. After our daughter got off oxygen, one of my favorite nurses told me it was time to start teaching her how to use a bottle. Having breastfed my first two kids, I had made it 5 years into motherhood without ever having given a baby a bottle. Plus, the method for feeding a preemie is so different I doubt it would have made much difference any way. She sat with me and walked me through each step, providing feedback as I awkwardly managed the bottle.
A few days later the “desats” started. The red monitor would beep letting me know her oxygen was falling and I would watching her number drop. Then her heart rate would follow. It was terrifying. Twelve hours later, I hadn’t left her side, sure that if I did something horrible would happen. The night nurse probably saw that I was a bit of a disaster.
“You can go sleep for a bit,” she told me. “I promise I will be here. I will watch her extra for you tonight.”
The days got better and my baby girl grew stronger. I was always in the NICU so everyone knew me and what I did for a living. Three weeks in she started stalling on her food intake. We had to get to the point where she could take all of her milk without a feeding tube to go home and it seemed like we had hit a plateau. Three weeks away from my family felt like an eternity and I was frustrated that I couldn’t solve this problem and bring her home. Late in the afternoon, our nurse came in and started asking me about my kids and life in general. I knew that breaks between feeding preemies is limited in the NICU and this was her time for charting. She’d stay late to finish if she sat and talked with me. But it was so nice to talk about something other than oxygen levels and milliliters of milk. I know she could tell I was stressed and she used her valuable time just to sit and talk to me. She knew I needed that and she was right.
During my entire time in the NICU not once did anyone say, “Well, you already know that since you’re a nurse.” They explained everything. No one commented, “Just be glad she wasn’t 3 months early like the baby next door.” They knew the NICU is stressful no mater how long you are there. They took care of my baby, but they also took care of me.
The experience reminded me of the importance of humanity in health care. For my first few years of practice, I could tell you the name of everyone I had diagnosed with cancer. I can’t anymore. I diagnose diabetes at least once a week and while I’ve had that discussion so many times, it is always the first time for my patient. Getting the right diagnosis and creating the treatment plan is important but so is caring. Sometimes knowing, empathizing, and trusting are more important than diagnosing, prescribing and treating.
The same philosophy applies outside of the clinic. People need more than health care to be healthy and it is easy to loose sight of our humanity as we consider social issues. It’s easy to say, “This housing situation isn’t ideal but it’s better than homelessness.” Or, “If he just worked harder he could make the money stretch and buy healthier food.” Or, “If she hadn’t used drugs, she wouldn’t be in this situation.”
Those comments aren’t helpful but we’ve all made them. What if we tapped into our humanity and let ourselves be grieved by the suffering of our neighbors? My NICU experience was a reminder of how vulnerable it is to be a patient. But my patients aren’t only vulnerable when they are in my office. They are also vulnerable to food insecurity, inadequate housing, chronic stress, and lack of financial means. We all are. My goal is to meet each patient with a presence that communicates that I see their struggle and I care. Whether it is letting them know their blood sugar has reached a diabetic level or addressing a concern they’ve marked on the social determinants screen, I resolve to tap into my own vulnerability and offer them genuine care.
One last observation from my time in the NICU has stuck with me. I watched these nurses bond with babies and their families. They spent weeks and often months cuddling, feeding, and teaching to get these babies ready to go home. The day finally comes and they say good-bye, never knowing the rest of the story. They don’t find out who those babies grew up to be, what they did with their lives, or the impact they made in the world. It doesn’t matter because for them, every baby in that NICU deserves the same chance for a healthy life. I want to approach my work in this world with the same attitude. When we engage in community development or pass policies to promote health equity, we don’t get to know what the community will become or what people will do with the benefits they receive. But maybe it doesn’t matter because every neighborhood deserves a chance to be healthy.