As Covid-19 surged through the United States this spring, Reina and James were told they could no longer stay with their severely ill newborn in the hospital’s neonatal intensive care unit and could visit for only a few hours — separately.
“My husband was allowed to visit for just one hour a week and had to prebook his time,” Reina (the parents’ names have been changed to protect their privacy) shared with one of us. “I was allowed to visit for two hours each day. Our baby sadly gained his wings seven days after he was born.”
The coronavirus pandemic has forced billions of people and institutions to make difficult decisions to prevent harm and save lives. Many of these decisions affected how patients experience health care. One particularly traumatizing change has been directed at parents of newborns receiving care in neonatal intensive care units (NICU).
Having a medically fragile infant is traumatic and highly stressful. Tragically, it is not uncommon for babies in the NICU to die during their first days, weeks, or months of life. The pandemic of an easily spread and deadly virus has made this situation even harder.
When Covid-19 hit, decision-makers had no choice but to enforce restrictive policies for two reasons: to limit the spread of SARS-CoV-2, the virus that causes the disease, and to conserve their limited supplies of the personal protective gear needed to prevent infection. One widely instituted policy was to strictly limit visitors, which is reasonable in many hospital units.
That might be good for infection control, but it goes against everything we know about caring for sick newborns. Both parents (or a parent plus a support person) need access to their infant’s bedside often and at the same time. The risks of Covid-19 must be weighed against the known risks and harms of separating babies in the NICU from their parents.
In the NICU, parents are not visitors: They are essential members of the care team. Parents know their babies better than anyone else and are often the first to recognize when something is wrong. It is intuitive to understand that babies need their parents, yet this is also borne out in research. For vulnerable newborns, their mother’s milk is a lifesaving intervention. Infant skin-to-skin care with parents promotes growth and healthy development.
Shared decision-making is critical in the NICU, where parents and providers must work together to optimize decisions that can have lifelong health implications for the infant. Because things can change so rapidly in a sick newborn, parents need to be at their child’s bedside so they can be informed and participate in these vital health decisions. Limiting parents’ access harms the therapeutic alliance that needs to exist between NICU providers and parents.
Bonding during this developmentally fragile period is crucial. Limiting parents’ access disrupts the nurturing interactions that are necessary for an infant’s cognitive development and that are also essential to parents’ mental health. “Even though our daughter is now home, our NICU’s one-parent policy has left us with deep psychological scars,” a father shared with us.
The wide variation in Covid-19 visitor policies between hospitals fuels mistrust. NICU parents and providers have reported a range of policies: Some hospitals allow unrestricted access for two parents at the bedside, others allow just one parent to visit for only two hours a day, and there’s just about every possibility in between. Permitting just one parent at a time to be with their child is an unlikely Covid-19-reduction strategy, as most parents are in close contact outside of the hospital.
We need to close this gap and ensure that all NICU families receive high-quality care by giving parents access to their medically fragile infants. Seemingly strict but malleable visitor policies are also inequitable in that families who advocate for themselves are often told that both parents can be at the bedside, while families with less ability to advocate for themselves are required to comply.
Parents’ basic rights to see and care for their own child are infringed upon when they are inaccurately categorized as visitors. Infants’ basic right to physically access both of their parents must also be considered. Health care providers and parents should work together at local and state levels to assure safe practices that honor the unique situation and needs of sick newborns.
Parents can be screened with the same protective procedures applied to all essential care team members who come in and out of the hospital every day. While certain parental restrictions may be justified in specific high-risk situations, extensive parental limitations should always be minimized. Efforts must be made to mitigate public health risks while maximizing parental rights.
Babies in the NICU need both of their parents at their bedsides, and their parents’ psychological well-being depends on being there. The way families experience care in the NICU remains with them for their lifetimes. When asymptomatic, two-parent access to their infant’s bedside should be the standard of care. Anything less is indefensible.
Jennifer Canvasser is the mother of a child who died from necrotizing enterocolitis after spending several months in the NICU and is the founder and director of the Necrotizing Enterocolitis (NEC) Society, a member of the Chan Zuckerberg Initiative’s Rare As One Network. Kurlen Payton is a neonatologist, interim director of the neonatal intensive care unit at Cedars-Sinai Medical Center in Los Angeles, and co-director of quality improvement collaboratives for the California Perinatal Quality Improvement Collaborative. Elizabeth Rogers is a neonatologist and director of the ROOTS Small Baby Program at UCSF Benioff Children’s Hospital in San Francisco. The authors thank Jochen Profit, a neonatologist and associate professor of pediatrics at Stanford University School of Medicine, for his help writing this article.