When widespread restrictions were put in place across the country to stem the spread of COVID-19, they carried with them unintended consequences for a particularly vulnerable group of people.
Families with babies in most hospital Neonatal Intensive Care Units (NICUs) across Canada faced limitations on who and when they could see the newborns. In many cases, families had to choose one person to be the main support for their baby and could not leave the NICU. For some, that meant mothers faced challenges providing life-saving breast milk to their babies, many parents felt alone and isolated in the specialized NICU wards, many fathers grappled with not being able to spend time with their babies or support their partner and, some parents had to leave their baby alone in the NICU as they could not return to the NICU if they left to care for family members or other children at home.
Researchers believe those experiences are likely representative of families who had to adjust to a national patchwork of policies aimed at protecting babies from being exposed to the novel coronavirus after it was declared a pandemic last March.
Marsha Campbell-Yeo (shown left), a professor at Dalhousie University’s School of Nursing and the director of the MOM-LINC research lab, saw the need for a study that was national in scope after hearing concerns from families in Halifax and discovering there was little to no research looking into how families have coped with the new NICU rules.
“What we realized is that vulnerable populations like those in the NICU really shouldn’t be part of the physically distancing policies because of the unintended consequences. But when we wanted to advocate that, it became very clear that it wasn’t enough to just talk to the few families that we did,” says Dr. Campbell-Yeo.
“So, we used some of the information that we gleaned from the interviews we did in Halifax to create a survey. Then it became very apparent that no one in the country was asking these questions, so we didn’t have any idea what the national experience was.”
Dr. Campbell-Yeo and team in collaboration with colleagues from the Canadian Premature Babies Foundation, and other experts in the field that includes neonatologist, Dr. Karel O’Brien from Mount Sinai Hospital in Toronto, have launched a national survey asking parents how they have been affected by the restrictions and what can be learned from their time in hospital NICUs. The anonymous questionnaire takes about 15 minutes and asks about everything from how long a baby was in hospital to how pandemic restrictions affected parents’ ability to be close to their baby. So far, they have received almost 40 responses and are hoping to get about 500 from people across the country whose babies were in a NICU as of last March.
The survey also includes an open-ended section where families can share their experiences in NICUs, something Dr. Campbell-Yeo has already yielded comments about parents’ heightened stress.
Interviews with families in Nova Scotia also revealed the strain on some families, says Dr. Campbell-Yeo.
One mother said: “Really the biggest impact on us right now is I'm not able to nurse my [twins] because I can't bring my [other child] in during the day because my husband is an essential worker. So, he still works during the days.”
A father explained how hard it was to not be able to be there for his partner: "You know, they need you but you cannot be there for them. That's the part that hurts the most. So that's how I see it. So, it's really emotionally hard on both parents. Because when someone needs you most, you should be there for them. But your hands are ties and you cannot be there for them."
One new mother said, “for me to be all alone kind of definitely did its number on my mental health because I've had a lot of breakdowns and things like that,” while another said, “it was pretty traumatizing for me being alone, really. That's how that's affected me the most.”
And still another Nova Scotia mom simply stated, “To summarize it, COVID broke my heart a little bit.”
A better way forward
Dr. Campbell-Yeo and her colleagues say there can be considerable unintended consequences in both the mental health of the families and the outcomes for the babies. She has seen reports of new mothers having reduced ability to express breast milk, which is vital to a baby’s ability to thrive, while maternal contact is also important for neurological development.
Dr. Campbell-Yeo is drafting an executive summary report to give to hospital administrators to help them address some of the global institutional issues and expects to have that ready in a few weeks. Her team is also launching a survey for health-care providers as a way to determine what their policies were around COVID-19.
While some of the restrictions have been lifted, there are still NICUs that are have severe restrictions in place affecting families.
At the IWK, Dr. Campbell-Yeo says that early on when a woman came in to deliver, she could have one support person with her, but if your baby required neonatal intensive care only one person would be allocated as that baby’s support person. If she had to leave to, for example, tend to other children, she wouldn’t be allowed to come back.
“So that left about 20 per cent of our babies without any parents being able to be there because of situations at home,” she says, adding that some babies are in the NICU for up to 100 days. Although we still continue to have some restrictions in place, fortunately, given the IWK commitment to family centred care, several of the restrictions have been able to be lifted.
There are still NICUs that have severe restrictions in place, some don’t allow anyone in.
“There are just a lot of unknowns across the country, so we just really want to understand what people did, how did they justify their decisions, what did they offer the families and did it really make a difference.
“We want to hear the family voice, since they are the ones most impacted.”
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