Advocacy Impact:
NICU parenting, SARS-CoV-2 and COVID-19
In 2018, I founded Empowered NICU Parenting as an online resource to minimize trauma and maximize the connection between parents and their hospitalized newborns, improve communication between families and care providers, and encourage parents to claim a greater sense of control and confidence to advocate for their needs. Parents are not visitors in the NICU. They are essential to the parent-infant relationship, and the latest evidence recognizes a parent’s role in the NICU as vital to optimal infant health and well-being with benefits that extend to parental mental health. I believe that every parent has the power to drive their baby’s team of care providers to deliver better and more personalized care, and I use the Empowered NICU Parenting platform to show parents and their support people what’s possible. As a mixed-race Filipina trained in the field of public health, I desire to shed light and bring equity in my exploration of the issues, including racial and ethnic disparities in preterm birth, health outcomes for babies, and mental health outcomes for parents—as well as bias, and racism in the NICU.
When the SARS-CoV-2 pandemic hit the United States in 2020, I utilized social media to stay in direct contact with the everyday experience of parents living with a baby in the NICU. I stayed current on COVID-19 recommendations and best practice guidelines from the Centers for Disease Control and Prevention, the American Academy of Pediatrics, and the American College of Obstetrics and Gynecology. I monitored and read through hundreds of studies, articles, and headlines to be informed of pandemic trends and current events. I closely followed and reported on what was happening in hospitals around the country for families birthing healthy term babies, as well as those with babies admitted to the NICU. Most hospital systems limited visitation to prevent the spread of SARS-CoV-2, and these rule changes often applied to parents with babies in the NICU. Without NICU-specific clinical recommendations or guidance for policies in consideration of the essential nature of the parent-baby dyad, hospitals independently adopted and enforced an arbitrary and nuanced variety of visitation policies, including restricted visitation and parent bans, which excluded all parents from the NICU for indeterminate amounts of time, regardless of health status. For some families, these bans forcibly separated parents from their medically fragile newborns for months or the duration of their NICU stay.
Outraged, I pushed back by creating and publishing content to navigate new rule changes. I defined restricted visitation and called out hospitals with bans, wrote a statement against unethical rules that banned parents from the NICU, and helped discern essential questions for parents to raise with their chosen hospitals and providers. Many NICUs relied on technology to fill the gaps as in-person parenting was reduced to prevent the spread of SARS-CoV-2. In response, I shared ideas for how to stay connected by optimizing video platforms to maintain shared decision-making and informed choice. I also wrote a first-of-its-kind tool for information gathering and communication that had never existed: the original and inclusive NICU Parenting Plan to help parents know their options, find clarity in their preferences, and communicate their needs to have a more satisfying experience parenting their baby in the NICU.
In my state of Virginia, when Carilion Children’s Hospital in Roanoke made a rule change to ban parents from the NICU, I wrote and disseminated a petition to Virginia’s Governor at the time, Ralph Northam, and Mayors Levar Stoney of Richmond and Sherman P. Lea Sr. of Roanoke, to safeguard family rights and end rules that ban parents from the NICU during community outbreaks. Over the course of a couple of weeks, and in a matter of days after pressure mounted online, Carilion Children’s reversed their NICU ban. They reopened with restricted visitation, a move better aligned with the kinds of NICU rules in place nationwide at the time. It was a rewarding effort to partner with parents to make that outcome possible through my writing, expertise, and reach.
In the early days of the pandemic in April 2020, I called on medical and public health bodies and human rights organizations in an official call to action for universal guidance to develop pandemic response guidelines for parenting in the NICU. It took nearly one whole year later, in January 2021, for a position statement to be released by the Association of Women's Health, Obstetric, and Neonatal Nurses, the National Association of Neonatal Nurses, and the National Perinatal Association agreed that parents are “essential caregivers” in the NICU, and when following the local health directive measures parents should be provided unrestricted access to their hospitalized infants. Most recently, some states have passed laws guaranteeing the right to visit patients, even during a pandemic.
As pandemic life continues to shift and parents have access to vaccines for their youngest family members, the course of the SARS-COV-2 virus remains unknown. I am dedicated to continuing this work and look forward to investing in leveling up my skillset in science writing and public health advocacy for parents and families navigating the NICU. Reach out and say hi anytime!