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.
Interesting article! Jacqueline Sears from EmpoweredNicuParenting.org has been writting about this topic for months, from the start of this pandemic. She’s a great resource for more information!
I completely agree. I had my daughter on June 19th and she was on the NICU for three weeks. During this time she had a 60% chance of survival and even when she got a pneumothorax we weren’t allowed to see her. So a defining moment in the life of our newborn was decided over the phone and when we had to put her on a ventilator we. Wouldn’t be there until the next day and even then it was a 4 day postpartum mother who still could barely walk, let alone walk alone to the NICU on the fourth floor. Plus medical information needs to be provided to both parents because 40% is forgotten by the time we got home. Additionally, there was no change in infection control because we drove to the hospital together and lived together so if he received COVID I would have it too and either one of us could have brought it in. It was the worst three weeks of our lives and it was increased 20 fold due to the ridiculous restrictions.
I agree and have been writing on this topic since the start of the pandemic.
A Call for Universal Guidance: NICU Visitation Polices During COVID-19 & Healthy, Asymptomatic Parents https://empowerednicuparenting.org/resources/call-to-action-for-universal-guidance
Six Essential Questions To Ask Today: COVID-19 And Visitation Rules In The NICU: https://empowerednicuparenting.org/resources/what-is-restricted-visitation-in-the-nicu
A NICU Speaks Through It’s Policies: Calling Out Hospitals with NICU Bans https://empowerednicuparenting.org/resources/nicus-speak-through-their-policies-please-listen
A Statement Against Unethical Rules that Ban Parents From the NICU: https://empowerednicuparenting.org/resources/statement-against-unethical-rules-that-ban-parents-from-the-nicu
I had my mico preemie at 25 weeks in march and it was one of the hardest thing we had to go thru not being able to see our child at the same time and not able to stay with him. Cause lots of pain and depression for both of us. With all the prayers our baby was able to come home 3 months later.. No one should have to go thru that.
I am a NICU RN and a Certified Neonatal Developmental Specialist. I fully agree with the article…sick and preterm infants need their parents or designated caregivers as theIr primary care team. Our brains are wired for that connection from birth, even if early. Lack of bonding is damaging to normal and healthy brain maturation. I am also very concerned about these babies language development with everyone wearing masks. Babies expect to gaze at their parents/caregivers eyes, nose, and mouth with the earliest language development being to mimic the mouthing movements and facial expressions they see. With a mask on, this component is gone, as well as all of our sounds are muffled, and unclear. This too will inhibit appropriate language development. I fear for our children and their development and it seems our elected state officials are not considering any of these issues that are detrimental to our children. And how strange we must look to these babies when all they see are eyes and no face. This is not normal or beneficial to the mental health and well being of children and it breaks my heart that we allowing this to occur.
Thank you for sharing this information. Hoping it will enlighten those that are seemingly not mindful of growth and devcelopmemthjl
I want to let you know that you can order masks online that are clear. Then at least the baby can see eyes, nose, and mouth! Much better if baby can see smiles and expressions.
I 100% agree. I had twins in April. My husband and I were not allowed to both be in the NICU even though there were technically two bedsides. We finally were moved to another section of the unit, so the babies were in two different “cubicles” but we were still unable to both be at the bedside of the same baby. While I was recovering in the hospital for a week I rarely saw my husband because either one of us was with the babies at all times. While I understand the thought of this policy, you can’t tell me all the other precautions being taken can’t make up for having two parents/caretakers at the same bedside.
I too am going through this as we speak. My son was born on June 10, 2020. He was 27 weeks old. The policies keep changing over time and it’s at times hard to keep up with. It is mentally stressful to be unsure when exactly you will be able to see your child. Me as tbe mother I was allowed special permission to come and go as a please but my boyfriend was told he could not see our son after I was discharged. Then they did make an exception on Father’s day and now finally have allowed for the fathers to come from 11-6 but can only stay for 2 hours. How does that make any sense?
This story hits home as My NICU baby is home after 110 days of visits from February to June 2020. My baby is finally home. I too spent 110 days during this pandemic as an essential care team member providing milk – kangaroo care and being a care advocate for my little 25 week 1.5 pound baby.
I think it’s ok for parents to take turns back with the baby- only 1 can hold at a time and the space is tight in most nicu, However it’s very important for both parents to spend as much time as allowed caring for, talking to and touching their babies!
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