Ryan McAdams, a neonatologist in Madison, Wisconsin, had a complex case to handle: A tiny newborn with a heart defect needed surgery. The baby had been struggling to feed, so doctors planned to insert a gastrostomy tube directly into the stomach to assist in supplementary feeding. The baby’s mother was around all the time to care for the infant, until she tested positive for COVID-19 and wasn’t allowed to be in the hospital.
The baby wasn’t feeding as well without the mom there, McAdams says. When the mom’s isolation period officially ended, at midnight before the scheduled procedure, she rushed back to the hospital. She told McAdams the agony she had experienced at home, sobbing as she watched the cribside camera set up to see her baby. “She just kept saying, ‘I wanted to be there,’” he says. “It was heartbreaking.”
As a part of the hospital where babies are sent when they are very sick—perhaps because they have trouble breathing after birth, or because they were born far earlier than expected—the NICU has a special role. Patients sometimes stay for months, cared for by nurses and parents who must inevitably take breaks, coming and going from this isolated world. And in that shuffle, Omicron found openings. As case rates rose, caring for babies in the NICU became more complex, and families struggled to keep up with changing policies.
No one ever plans on spending time in a NICU, but one in 10 babies ends up there, says Rachel Fleishman, a neonatologist in Philadelphia. Most commonly, babies head to the NICU because their transition from the womb to the world outside did not go well, even after a full term of gestation, Fleishman says. Preterm babies, as small as your hand, as light as a can of soda, might need longer stays. The babies are attached to a maze of machines and wires, and tubes in their mouth. “You’re the parent, but you’re also an observer, and you can’t fix things,” McAdams says. “It’s a really stressful, formidable environment that you’re thrown into.”
It has never been harder to be a NICU parent than now, says Rochelle DeOliveira, the director of peer support at the nonprofit Project NICU, whose son spent 97 days in the NICU. “The concerns NICU parents have always faced—sickness, visitors, hand-washing, isolation—have been hallmark aspects of the journey long before this pandemic,” she told me. But now they have become even more overwhelming and controlled.
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She says the project is still hearing stories of parents who are not permitted to remove their masks or gloves when holding their babies; restrictions, in some hospitals, are still so stringent that grandparents have never been permitted to see their grandchildren. Meals in the family lounges, lactation and other support groups, and additional opportunities to connect with other parents in the NICU have been eliminated too, DeOliveira said.
Parents might live like this for months—some babies stay in the NICU that long. The goal for most of that time is simply to keep the babies alive until they’re strong enough to go home, McAdams says. “We have these fragile little babies who are like these little warriors, you know, fighting for their lives and have all these struggles against them.”
Until recently, COVID was not usually one of those struggles. “It was pretty rare to have a baby with COVID, let alone a baby that was sick with COVID,” McAdams says. That situation sometimes made him feel guilty—he was caring for all these babies, while his colleagues were managing an onslaught of death and serious illness in adults in the next wing over. The mood could grow ominous, Fleishman says, hearing alarms and codes go off several times a day in the adult ICU.
All of that has changed with the recent Omicron surge. Now the NICU where McAdams works is seeing more babies testing positive, more symptomatic babies, and many more parents with COVID. “We’re back to wearing not only surgical masks, but N95 masks and eye protection.”
The hardest part of the surge has been separating parents from babies after a parent tests positive for the coronavirus, Fleishman told me. She has seen parents who were essential workers separated from their infants, aching for their caramel smell and velvety skin, and mothers who risked losing their milk supply and pumped with such dedication that their nipples bled, asking her: “When will I get my baby back?” “That separation is really heart-wrenching for us as physicians; it’s very challenging for families, for the nurses as well.” She says she ends up calling the families often with positive updates on the baby, and they can also monitor through a cribside webcam.
But none of that makes up for not being there, for the mother or the baby.
Caregivers and infants are really a dyad—their outcomes and health play into each other’s, Clayton Shuman, a maternal-infant-health researcher at the University of Michigan, told me. When an infant in the NICU is ill, that illness affects the parent’s mental health. NICUs tend to focus on this pair, in supporting family-centered care through breastfeeding and skin-to-skin contact. But during the pandemic, infection prevention has taken over. And it makes sense: Neonates are especially vulnerable to infections.
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Shuman has been studying families with babies in the NICU during the pandemic, and the biggest way that the NICU has changed, he says, is a shifting ground of visitation policies. Many parents describe updated visitation policies where they have to choose prescheduled slots in which to spend limited windows of time with their baby, so as not to overlap with other parents, DeOliveira, of Project NICU, said. In one study, conducted in 2020, 46 percent of NICU parents said that only one person was allowed to visit at a time, and Shuman says his data show 67 percent of the parents reported more than one change to a policy during their child’s stay in the hospital. That makes caring for a sick baby incredibly challenging. Visitation restrictions disrupted parents’ plans to breastfeed, which can be helpful to vulnerable infants, Shuman said.
Shuman’s research found that the parents of NICU babies were experiencing unusual levels of distress, on top of their decreasing likelihood of breastfeeding. This situation led the National Association of Neonatal Nurses to publish position statements about the role of parents as essential caregivers to their infants—not just as future caretakers but as team members in the NICU.
Policies that keep COVID-positive parents separated from their babies vary by hospital, and may have to do with factors outside doctors’ control. Some NICUs keep multiple patients in the same room; others have single-patient rooms, which allow more protection. When babies in the NICU do come down with COVID, it complicates their other medical issues—getting the coronavirus generally adds a week or two onto their hospital stay, McAdams says. And the long-term issues are still unknown for newborns: that is, whether COVID in infancy has any lingering impacts, such as brain fog, heart issues, problems with smell or taste. “A baby can’t tell you any of that stuff. There are a lot of question marks I think that will need to be studied,” he said.
At the same time, some research shows that separation from parents can be connected to babies’ failure to thrive, and could affect cognitive development, Shuman pointed out. “The NICU is that unique time when that connection is broken,” he said. “If a mom is still recovering and the baby is removed, the restrictions during COVID lead to prolonged separation of mother and infant.” In other words, the separation itself could be its own risk.
One strange silver lining that Shuman found in his research: Although having a baby during COVID increased the odds that a mother would be diagnosed with postpartum PTSD, having a baby in the NICU was sometimes protective against this type of stress, paradoxically. He thinks that’s because, in the NICU, parents had support. “We think that exposure to the nurses was somewhat protective, because they were able to provide support and consistency,” he told me. “Those who did not have a NICU baby, they didn’t have visitors, and they were overwhelmed.”
That support can, in some ways, extend to a parent’s COVID diagnosis. McAdams was handling a preterm baby who wasn’t feeding well—the baby’s mother had been in the NICU for days when she tested positive for COVID. She called McAdams and told him she wanted to take the baby home.
The baby wasn’t quite ready to go home, he told her; it needed a few more days in the hospital to really make sure that the feeding was going fine. McAdams also ordered a COVID test for the baby—and it came back positive. Fortunately, the baby was not symptomatic. McAdams called the mom back, and arranged for her to stay isolated in the NICU with the baby, so that they could be together and she could breastfeed. It ended up working out: The baby didn’t get ill, and was able to stay with the mother. But there were challenges, McAdams said: “If mom then gets sick in the hospital, we’re in the neonatal ICU. It’s not the adult ICU, so if mom gets sick, we really can’t take care of her—she’s not our patient.” Ultimately, their job is to do whatever is best for the baby.