Who’s Going to Smile at My Baby? When the Pandemic Comes to the NICU

From the doorway, I watched the mother gently stroke her newborn’s forehead. “I love you,” she whispered. “I’ll be back soon.”

As a resource parent in the neonatal intensive care unit (NICU) at a large children’s hospital, I am privileged with the task of offering support to families. This was a typical stop in one of many patient rooms. As I gingerly entered the room, the mother glanced up at me, tears welling in her eyes as she scrambled to adjust her mask.

“I’m sorry,” she stammered. “I didn’t want to cry.” A tear rolled down her cheek.

“Not at all,” I replied. “I understand. It’s hard being a mom in the NICU, now more than ever.”

I invited her to share her feelings, hoping to offer some help or comfort. Wiping her cheek with her sleeve, she explained that the pandemic visiting rules had made it difficult to be at her baby’s bedside.

“I have other children, and I need to go home to watch them. The hospital rules say I am the only person allowed to take off their mask in her room, but she needs to see faces for her development. Who is going to smile at my baby when I’m not here?”

Speaking from personal experience.

My own NICU story began years ago with my own daughter, born prematurely with congenital heart disease and an abdominal defect. Her prolonged admission included two cardiac arrests, open heart surgery, and more procedures and treatments than I can count. When your baby is in the NICU, attached to a ventilator and a feeding tube, it is hard to find your identity as a new parent. Though nurses and physicians offered comfort and encouragement, none had been in my shoes.

Our NICU story had a happy ending, but as I watched my daughter grow up, I thought about parents after me: parents who put on a brave face for the medical team but cry in secret over feelings of inadequacy as parents. Through this reflection I found my calling as a source of support and comfort for parents before, during, and after their baby’s NICU admission.

Having access to an experienced parent like me is known to reduce parents’ depression and anxiety, and is beneficial for confidence, well-being, coping, and acceptance. In my conversations with parents, they say they can be vulnerable with me, sharing feelings and concerns they are uncomfortable telling their doctors and nurses.

NICU restrictions during the pandemic.

Now during the COVID-19 pandemic more than ever, these parents need a listening ear. To slow the spread of the SARS-CoV-2 virus, our hospital, like most around the country, adopted policies aimed at protecting our patients, families, and staff. But these changes—enacted to promote the health of many—unintentionally pose a grave threat to the health of a few.

Family presence at the bedside has been sharply restricted. Members of the hospital care team must wear masks in patient rooms at all times. Only parents, the sole permitted visitors, may remove their masks when interacting with their infants, and only when there are no others in the room. Coupled with decreased childcare options, limited public transportation, and the closure of critical resources like Ronald McDonald houses for patient families, many parents, especially those whose infants have long hospital courses, face increased barriers to being at their baby’s bedside.

A loss of crucial stimulation and engagement for infants.

We have long known that even the youngest infants look at faces preferentially. Beginning shortly after birth, it is foundational to early development and sociocommunicative language and behaviors. What might our youngest patients be missing when their caregivers’ expressions are obscured by masks? A smile could be the most influential stimulus that a baby in the NICU—whose hospitalization may last many months—experiences on an average day. How will this impact their future?

As I looked into this mother’s eyes, deep fears about my own daughter’s future came rushing back: long days in the ICU worrying about the effects of treatments, noises, and not being able to snuggle my little girl. I remember leaving her bedside, crying all the way back to my room, desperate for the next opportunity to hold her.

Other parents in the NICU have echoed these fears, agonizing over long-term effects the pandemic restrictions could have as their baby grows into adulthood: “Will my baby learn facial cues crucial for their social development?” “How will she bond with our family if other family members cannot visit?”

Lasting repercussions for our society’s most fragile members?

As COVID-19 continues to wreak havoc in the United States, I struggle to address their concerns. Without question, the risks posed by the virus necessitate widespread use of masks, especially in hospitals. But we must consider the possibility that repercussions of masking in the NICU could be lifelong in these most vulnerable patients.

These unprecedented times have created many situations where weighing harms against benefits yields no clear answers, but one thing is certain: the more seriously we as adults take our obligation to engage in evidence-based practices such as mask-wearing, social distancing, and now, immunization, the less we will have to worry about the long-term health and development of our society’s youngest and most fragile members.

About the authors: Janet Sides is a veteran resource parent, and has used her own experiences with her daughter to support parents in the Brandon NICU at University of Michigan Mott Children’s Hospital in Ann Arbor for over 12 years. Stephanie Kukora, MD, is an assistant professor in neonatal-perinatal medicine and bioethicist at the University of Michigan Mott Children’s Hospital in Ann Arbor. The authors would like to thank Drs. Phoebe Danziger and Donna Martin for their thoughts and suggestions on the manuscript. 

To read more about support parents: 

1. Hall SL, Ryan DJ, Beatty J, Grubbs L. Recommendations for peer-to-peer support for NICU parents. J Perinatol. 2015;35 Suppl 1:S9-13. doi:10.1038/jp.2015.143.
2. Bourque CJ, Dahan S, Mantha G, Robson K, Reichherzer M, Janvier A. Improving neonatal care with the help of veteran resource parents: An overview of current practices. Seminars in Fetal and Neonatal Medicine. 2018;23(1):44-51. doi:10.1016/j.siny.2017.10.005