“I didn’t know it would be so bad,” the new mother said to me, whispering so as not to disturb her two-week old infant rocking in her crib in the dark NICU room. Her baby was suffering from neonatal opioid withdrawal syndrome, or NOWS, a postnatal withdrawal syndrome that newborns experience after exposure to opioids in utero.
In wake of the opioid epidemic, NOWS is also reaching epidemic proportions. In 2016, the overall incidence rate of NOWS was 6.7 per 1000 in-hospital births1 and has increased more than fivefold from 2004 to 2014.2
The year was 2017 and I was working on a research team dedicated to studying NOWS and pregnant women taking opioids. That year in Maine, where I worked, the incidence rate of NOWS was 31.4 per 1000 births, one of the highest in the country.3 We took on a variety of projects to try to improve care for the mother-baby dyad, yet we encountered more questions than we could possibly answer. In an effort to understand the experience of pregnant women taking opioids and other substances, I conducted short interviews with new mothers of NOWS infants in our hospital.
I hoped to be an intermediary between the patients and their healthcare team; I was not a medical professional, nor did I directly participate in their medical care. I made sure to carefully introduce myself and my role before each interview, hoping to put each new mother at ease. I presented my questions and let each woman tell her story, and what I learned was compelling. The stories below represent an aggregation of fourteen interviews.
She told me how she couldn’t bear to tell her OB/GYN about her opioid use because she knew it would disappoint the doctor. She tried to manage her opioid replacement therapy on her own with Subutex she bought on the street. It seemed like the best she could do.
She told me that she felt the nurses excluded her from her baby’s care, and it seemed to her that they judged her ability as a mother. She noticed that her accounts of her baby’s withdrawal symptoms were reported incorrectly, and tension grew between her and her baby’s medical staff. She told me she had started to withhold information from her nurses for fear it would be misconstrued.
She told me her prenatal care provider had lied to her: her baby’s stay in the hospital was already twice as long as the six-day hospital stay she was assured. The withdrawal symptoms she was told about were downplayed, and no one had mentioned that the Department of Health and Human Services would be involved. She had no idea what was going to happen next.
She told me she felt guilty for what she did to her baby, but the judgmental comments from healthcare providers made her feel even worse. She felt that they thought the worst of her. When she left her baby’s hospital room to go care for her other children, she was asked if she is going to see her friends.
These stories, especially the themes of judgment and mistrust, pointed to a clear need for change. Whether or not the judgement and misinformation was purposeful, the concluding impact on these mothers was damaging. Already put in a difficult situation of managing both a pregnancy and a substance use disorder, societal stigma and judgement distorted their experiences, especially since stigma is a well-documented barrier to healthcare engagement.4 Reflecting on these stories, I couldn’t imagine the added weight of not having that reliable external resource to turn to.
As medical providers, it is our responsibility to create a welcoming environment for our patients. These stories made it clear that it was time to point the spotlight back on ourselves and determine what our medical team could do to improve the atmosphere our patients described. We initiated trauma-informed care sessions, provided medical updates on NOWS, and created an avenue for better communication between the patients and the medical care team.
While this project was specific to one hospital, it sheds light on stigma-related issues that are likely to be seen elsewhere while highlighting the importance of the patients’ perspective. Tackling the entire opioid epidemic from within the halls of our hospital felt like an insurmountable task, with loose ends flying everywhere and many issues simultaneously screaming for attention. It could have been easy to get lost in that task, moving down a neverending list of impossibly broad goals. However, after this interview project, our efforts gained focus. Our new mission was to repair the most personal, essential aspect of medicine: the patient-provider relationship, a connection particularly important for patients with substance use disorders.
- Strahan, A. E., Guy, G. P. G., & Bohm, M. Neonatal abstinence syndrome incidence and health care costs in the United States, 2016. JAMA Pediatr. 2020; 174(2); 200-202, doi:10.1001/jamapediatrics.2019.4791
- Winkelman TNA, Villapiano N, Kozhimannil KB, Davis MM, Patrick SW. Incidence and costs of neonatal abstinence syndrome among infants with Medicaid: 2004-2014. Pediatrics. 2018;141(4):e20173520. doi:10.1542/peds.2017-3520
- HCUP Fast Stats. Healthcare Cost and Utilization Project (HCUP). August 2020. Agency for Healthcare Research and Quality, Rockville, MD. www.hcup-us.ahrq.gov/faststats/nas/nasmap.jsp.
- Corrigan P. How stigma interferes with mental health care. Am Psychol. 2004;59(7):614-625. doi:10.1037/0003-066X.59.7.614.
Olivia Avidan is a fourth-year medical student at Tulane University School of Medicine going into internal medicine. She is interested in studying social determinants of health and is particularly concerned with how societal stigma impedes medical care. In her free time, she enjoys playing music on New Orleans patios and curling up on the couch with her dogs.