- Human contact is a well-established component of care for critically ill and premature babies, and parents and caregivers are normally encouraged to visit neonatal intensive care units.
- But once the pandemic hit, hospitals were thrown into chaos. Access was restricted to curb transmission, and NICUs shut caregivers and parents out, or allowed only one person to visit.
- For parents across the US with babies in NICUs, the restrictions have been a nightmare. “I cried every single drive home,” one mother told Insider.
- Healthcare providers have been forced to weigh the risks associated with the coronavirus against the trauma that comes with restricting access to a sick or premature infant.
- As the US faces a new wave of cases, hospitals are once again grappling with how to care for their tiniest patients.
- Visit Insider’s homepage for more stories.
Back in May, Elijah Zorn lay in his incubator, all 3.8 pounds of him, a ventilator mechanically inflating his tiny chest. He was six weeks premature and had suffered a lack of oxygen to his brain at birth. He was airlifted from one hospital to another in critical condition. No one knew if he would survive.
Beside him sat Jeremy, his exhausted father. Elijah’s mother, Riannon, was miles away, recovering at home after a traumatic delivery. Yet she was desperate to be with her baby. “Ihave to see my kid,” she recalled thinking.
She was barred from visiting because of a rule instituted to prevent the spread of COVID-19. It was, and to some extent still is, common. It was designed with good intentions, but it goes against what we know about how to best care for premature babies.
A first-time visitor to a NICU might think that people have almost nothing to do with what happens there. It’s a place of technological intensity, where infants born prematurely or critically ill are treated with advanced life supports. Sometimes the tiny babies themselves are hard to see under all the machinery that keeps them alive.
That impression of the NICU, however, misses an important fact: Babies need human interaction to be healthy. Decades of research has shown that they especially need their parents. Most NICUs encourage parents or other caregivers to come anytime, to hold, touch, and speak with their babies, to feed them and even stay overnight.
When the pandemic hit, the open-armed way of running a NICU suddenly seemed impossibly dangerous, and everything about NICU care changed on a dime.
In the spring, hospitals were forced to restrict the number of people coming in and out, including parents with babies in the NICU. Some even barred parents completely. At first, it may have been understandable: health facilities were strained, supplies were scarce, testing was often unavailable, and knowledge about the effectiveness of masking and ventilation was still months away.
But nearly a year into the pandemic, some parents are still struggling to see their babies. On Twitter a recent video showed Juan Valadez, a first-time dad, playing guitar for his son, whom he got to see just once a week.
Neonatal providers are trying to find the best ways to balance competing health concerns within a void of national guidance, which many find distressing.
“This is an unresolved tension for us,” Dr. Valencia Walker, a neonatologist and associate chief diversity officer at Ohio’s Nationwide Children’s Hospital, told Insider. “There’s the safety of our healthcare workers and of other people in the hospital to consider. And then there is prioritising the well-being of your patient. It’s an ongoing struggle.”
The crisis may worsen still, as a symptomatic COVID-19 infection seems to increase the likelihood of premature birth. Although some reports indicate fewer preterm births during the pandemic, the reason is unclear.
Comprehensive data on NICU restrictions do not exist yet, but the first study on the changes, published in August, looked at 277 care units. It found that 47% significantly restricted parents from seeing their babies, a significant shift from prepandemic times.
“In total, the rapid implementation of these sweeping changes may have substantial impact on parental and family well-being and may lead to detrimental effects on neonatal health outcomes,” the authors said.
‘Is he alive?’
When Elijah Zorn was born, on May 12, his future was deeply uncertain. Riannon’s water had broken at 24 weeks, but to delay birth, she’d been hospitalized until 34 weeks, when outcomes for babies are generally better.
As Riannon was being prepped for a cesarean section, Elijah’s body slipped into Riannon’s birth canal, but his head remained stuck inside her uterus. For 10 minutes, during which time he was deprived of oxygen, physicians struggled to get him out.
Finally, Riannon recalled, she saw what looked like a blue rag doll being carried across the room. “Is he alive?” she said, before being put under general anesthesia.
Elijah was alive, though his Apgar scores, an index used to evaluate the condition of a newborn infant, were 0 and 1, meaning he was born without signs of life, and he was resuscitated. But the hospital was unable to provide the increasingly complex care he required, and he was soon transferred to the Nemours/Alfred I. duPont Hospital for Children, in Delaware, which had a higher-level NICU.
Riannon had emergency surgery and received a blood transfusion, but she felt as if she was going to pass out all the time, and she was in excruciating pain. She certainly couldn’t do the hour-plus drive from their home in Pennsylvania to Elijah’s hospital in Delaware.
By that point in the pandemic, the hospital allowed only one parent in the NICU, with no switching. Jeremy started going to see Elijah each day. For that first week, Elijah’s survival was in doubt, but it was hard for Riannon to know exactly what was happening.
Still, she knew she couldn’t be the designated caregiver because she wasn’t well enough to go alone every day. The Zorns also have a 5-year-old daughter, and her school was closed.
The couple called the hospital and begged for an exception, citing Elijah’s condition, which they eventually received. But there was still hospital bureaucracy to navigate.
“Several times we would get to the hospital and there would have been some kind of communication glitch and we would be sitting in the lobby for 45 minutes waiting for them to give the approval for me to go upstairs,” said Riannon.
It was clear to the Zorns that the staff were distressed by the restrictions and doing their best under heartbreaking circumstances. Still, the restrictions made everything more difficult, and they couldn’t wrap their minds around the logic of it. “Jeremy was coming home every night, sleeping in the same bed as me and then going back,” Riannon said. “We were equally contaminated!”
As Riannon and Elijah recovered, she wanted to give her husband a day off, but she worried whether she was healthy enough. Jeremy found it difficult, too.
“Being there alone was much more challenging than being there with someone. It was draining, not to have anyone to talk to,” he said. “Early on, it was hard because I felt like he had the wrong parent. If he was going to have one parent, it should be his mum, at least in our case. She needed to see him, too, psychologically. I felt there was a tension there: To get her there.”
At the end of the family’s stay, the policy changed to allow two caretakers at a time. Elizabeth Bradley, a NICU nurse manager at the duPont hospital, confirmed the change, but she added that it was possible the hospital might have to revert to one visitor if COVID-19 conditions worsened.
Over a Zoom call in October, Riannon gently bounced chubby-cheeked Elijah in her arms as he slept. He was still using a feeding tube that day, but he has since been weaned off it. His last brain scan was normal, and fears of major brain injury have faded.
“Now he looks me in the eyes and smiles. It seems like we are â€¦ not out of the woods, but things are progressing in the right direction,” said Riannon. “We are ok.”
Like coronavirus guidelines writ large, rules and regulations for NICUs in the pandemic vary
As regions across the US began to loosen restrictions for the general population, some NICUs encouraged parents and caregivers to come anytime, together or separately. But now, amid another nationwide surge, some are again halting plans to loosen restrictions or are beginning to reimpose them. Some never stopped.
There are no centralised guidelines about how hospitals should manage this crisis, and the only blanket rule is that people with active COVID-19 infections cannot come to the NICU. As with most health and safety measures during the pandemic, it is a patchwork of decisions, guided by the prevalence of the coronavirus cases in the area, the space the NICU has available, the risk tolerance of the hospital’s epidemiologists and administrators, and the interplay of state and local health departments.
It is highly variable â€” sometimes for good reason, because the spread of COVID-19 differs by location. But to families, this variability can seem capricious.
Dr. Elizabeth Rogers, a neonatologist at the University of California San Francisco Benioff Children’s Hospital, is disappointed by her own institution’s current policy, driven by the San Francisco Department of Public Health, which allows only one parent at the bedside at a time, except in narrow exceptions, such as if a baby is dying or end-of-life decisions must be made.
Recently, it added a 30-minute window in which parents can be together at the bedside as one arrives and the other leaves. The institution had planned to loosen the policy further, but the current surge in virus cases prevented that.
“The lack of parents as essential caregivers for neonatal patients is just an ongoing risk for our patients’ health,” she said. “We have limited a newborn to one parent. The birthing parent has just gone through the beautiful trauma of giving birth to a critically ill infant, and now they can’t have their partner in support of them. It’s just unconscionable.”
Rogers acknowledged the deep complexity of the issue and the need to balance the competing health and safety concerns. But she emphasised that trauma in the newborn period can last a long time. She said the balance needs to be rethought now that we’re armed with a better understanding of the virus.
“When we think about risk mitigation strategies for COVID-19 â€¦ we need to also think about risk mitigation for that long-term trauma of disruption of that family unit,” she said.
This resonates with Ari, of Queens, New York, who gave birth to her daughter at 33 weeks. (Ari asked that we only use her first name.) She had a difficult pregnancy, first with extreme nausea and vomiting, and then preeclampsia, a condition marked by high blood pressure and potential organ damage.
Ari’s blood pressure kept rising, necessitating an early cesarean section. Because her own condition was precarious, she was not allowed to see her daughter, Josephine, for 24 hours. Meanwhile, NYU Langone Hospital-Brooklyn allowed only one parent at a time.
“It was hard enough that I wasn’t able to see her right after she was born because of my preeclampsia,” Ari told Insider. “But then one of us was allowed at a time, that was it.” (The one-parent rule is still in effect in the NICUs at NYU’s various hospital locations in New York City.)
Ari and her husband switched off as caregivers, and each would Facetime the other from the NICU. “It was hard on both of us,” she said, explaining that her husband felt he needed to be strong for her. “I cried every single drive home,” she said.
She said both she and her husband have struggled to feel bonded as a family. She was diagnosed with postpartum posttraumatic stress disorder, for which she is getting therapy and medication. “I constantly check to make sure she is breathing. I’m constantly checking to make sure there’s nothing wrong with her. If she gets hurt or she starts crying, it’s like a panic bell in me.”
The mental-health challenges have been the most difficult part of the ordeal. But the visitation restriction was not the root cause of her PTSD; she said it was the overwhelming and pervasive fear involved in having a critically ill infant in intensive care during a global pandemic. Being alone in the NICU only made it worse.
A complicating factor is the open-bay style of some NICUs, where incubators are grouped together in large rooms
The layout is a product of how the first NICUs were built in the 1960s and ’70s, as a way to maximise space and nurses’ workflow, before the developmental needs of babies and families were considered in NICU design. In these older-style NICUs, social distancing among staff and parents can be nearly impossible.
The aforementioned study, published in August, found that open-bay NICUs were more likely to put restrictions into place. Yet some open-bay NICUs have been able to welcome both parents back again.
Dr. Deborah Campbell is the director of neonatology at the Children’s Hospital at Montefiore, in the Bronx, which has two open-bay-style NICUs and allows two caretakers at a time.
She said the thinking behind the restrictions was complicated and often driven by the spread of the virus and the resulting strain on hospitals. She added that, in New York, hospitals were being asked to dust off their contingency plans as cases surged once again.
But Campbell cautioned against any assumption that resource-limited or open-bay NICUs have been more restrictive than others. She said she has been part of conversations on listservs of neonatology division directors across the US, and the web of restrictions was not universally or obviously correlated in one way or another.
“I know places that take care of people who can write big checks that are still very restrictive,” she said.
Walker, from Nationwide Children’s, would like to see this issue addressed in a more organised and holistic way, especially given that the coronavirus has been worsening in most of the country.
“We need a COVID task force of our own,” she said, suggesting a group of neonatal health care providers, infectious disease experts, and families who could work with hospitals around the country to provide national guidance and education.
“We have to balance the tension between keeping our health care professionals safe, keeping all our babies safe, and providing the care our patients need. We can’t prioritise one over the other because we will not be successful.”
The rate of preterm birth in the United States is 10.2 per cent and rising â€” substantially higher than the rate in other wealthy countries. But that impact is not distributed equally: Black mothers are about 50 per cent more likely to give birth early than white mothers in the United States, and research has shown that that increased risk is in large part due to the health consequences of racism.
Being low income is also an independent risk factor for preterm birth, for families of all races and ethnicities. The babies and families impacted by these restrictions, then, are more likely to be families of colour or those with low income.
One potential problem with having no centralised guidance in a crisis is that policies can be enforced unequally. The Zorns got an exemption to see their son, as they should have, but they are white and relatively well-off. Would all families have been given that leeway? Would it have depended on how they were perceived, and who was doing the perceiving?
‘We have to hold leaders accountable’
For parents who find themselves with an infant in the NICU, the restrictions that have come with COVID-19 have made an already difficult situation â€” long commutes to the hospital, caring for other children, and inflexible work hours â€” almost untenable.
One of the first things Riannon Zorn noticed about the hospital where she gave birth was that the NICU still allowed two parents to be there â€” but at that time, it also restricted its hours to 8am to 5pm.
“That seems especially cruel to me,” she said. “Because any working parent? You either take the day off or you’re not seeing your kid at all.”
“What about the mum who doesn’t have a car?” Dr. Terri Ashmeade, a neonatologist and professor of pediatrics at the University of South Florida, said. “What about the mum who is relying on the bus? What about the mother who has three other children at home and doesn’t have an alternative caregiver?”
These barriers are just as real as COVID-19 restrictions, and they have only been worsened by the additional strain of the pandemic.
Dr. Rahul Gupta, chief medical and health officer at March of Dimes, said that while we may see this dilemma as separate from the big picture of the virus, it arises directly from mismanagement at the top. Actions â€” or inactions â€” on a federal level directly affect people’s lives, and this is an example.
“We have to fault the leaders for not adhering to the expert guidelines: This is one of the results,” he said. “We have to hold leaders accountable.”
“If both parents aren’t able to legitimately access their own child? It’s the leaders who are responsible for allowing the prevalence of the disease to be so high that the hospitals then have to institute those kinds of regulations to protect everyone.”
In the meantime, families are muddling through, doing their best to care for one another.
Hannah McCallister of Laramie, Wyoming, woke up one morning in January and realised she couldn’t feel her in-utero twins moving anymore. Normally they kept her up all night long.
She went straight to the hospital where she discovered her cervix was already dilated 5 centimeters. She was in preterm labour. She was transferred to a different hospital in Fort Collins, Colorado, where she remained on hospital bedrest for four weeks, until her pregnancy reached 34 weeks and her sons could be safely delivered.
But two weeks into the boys’ four-week hospitalisation, the pandemic hit.
McCallister also has two young daughters at home, and her husband was on the road doing his field training after graduating from the police academy. The family struggled to find ways to make it all work.
Visiting restrictions were changing practically every day. At first, McCallister said, the hospital said it would allow no parents at all, but then switched to one parent. (It has since returned to two parents allowed at a time.)
“Well, I’m the milk producer here,” McCallister remembered thinking. “So I guess I will go and my husband will have to just wait.” It was confusing and frightening, she said. It was unclear if it was ok to visit her sons if she had, for instance, gone to the grocery store the day before. “It was hard leaving both the girls, then leaving the boys, and then leaving my husband,” she said. “Just not having any family time.”
She has reflected on what these difficulties meant for her family.
“I am grateful that the staff protected the babies. It’s not just our babies in there â€” it’s everyone else’s babies, too,” she said. “But it definitely put a strain on our marriage. And my girls didn’t have me during that time. They didn’t have the mum that they know because I was torn between two separate places.”
“There were numerous aspects that have been taken away from us to be able to connect as a family,” she said. “Now we’re trying to do that.”
Sarah DiGregorio is a freelance journalist and author focused on health care. Her book “EARLY: An Intimate History of Premature Birth and What it Teaches Us About Being Human” was published by Harper in January 2020. She is working on a new nonfiction book, “Taking Care,” about the history and culture of nursing. It is forthcoming from Harper.