Preemie care now in the hands of parents

The Neonatal Intensive Care Unit (NICU) at Toronto’s Mount Sinai Hospital is not the kind of cozy, soothing nursery most parents dream of when planning for a baby. It’s a large, bunker-like room with a team of efficient nurses checking screens and answering phones behind a massive desk. The soundtrack is a low hum of muffled baby cries and whimpers amid beeping monitors. There are no windows, and the lights are normally set low; it’s impossible to have any sense of what time of day it is.

While the NICU can never feel like home, for many families, this is where they spend the first few weeks and months nesting, bonding and caring for their newborn babies.

Charlie Goetz was born at 25 weeks—so premature that his parents, Kelly and Jim Goetz, hadn’t settled on a name yet. Kelly, then 39, had had a fairly uneventful pregnancy. She was barely showing when her water broke and she was admitted to Mount Sinai for monitoring. She went into labour naturally 60 hours later.

“It was still so early,” says Kelly. “We had friends we hadn’t even told we were expecting yet. We had to send out a note: ‘This is an embarrassing email. Kelly’s expecting...and, by the way, we have a son!’ I went from not really even feeling pregnant to having a baby in the NICU.”

Charlie weighed just over a pound and a half at birth (or about 790 grams). He was too little to breastfeed or take a bottle, and he needed support to breathe, because his lungs hadn’t developed fully. Shortly after his first teeny-tiny cry, he was admitted to the NICU. There, he slept in a transparent isolette, adjacent to the machines that monitored his respiratory rate, his heartbeat and the saturation of oxygen in his blood. His space was furnished with books and trinkets and a bright, graphic-patterned blanket—perfect for stimulating a still-developing brain. A cheerful, sticker-decorated sign spelled out his name, and, after he started to put on weight, a certificate on the wall welcomed him into the one-kilo club. For weeks he was fed by a tube threaded through his nose or mouth—one of the many snaking wires that can make cuddling a preemie challenging.

Happily, just like a full-term baby, Charlie and the other NICU infants at Mount Sinai get cuddled for hours on end by their moms and dads. Kelly, now on leave from her job as a lawyer, is stationed by Charlie’s bed at least eight hours a day. Her husband, Jim, is there for an additional three hours or more each evening. They also change his diapers, take his temperature, and note how he’s doing at any given moment, which they report back to his care team.

This is because Charlie is part of a promising new medical model that gives parents a hands-on role in caring for severely premature babies (those who are delivered before 32 weeks gestation and require critical support). In Family Integrated Care (FIC, or, as many participants refer to it, FI Care, pronounced “figh care”), mothers and fathers of preemies are treated as their kids’ case managers. They fill out charts, participate in rounds, and develop care plans in conjunction with doctors and nurses. Mount Sinai piloted the project in 2011, introduced it as their standard of care in 2013, and they haven’t looked back since.

“It becomes a full-time job,” says Kelly. “But the days fly by. My role with Charlie has evolved depending on where he’s at.” At first, she and Jim learned how to do “hand hugs,” cupping their palms around Charlie’s wee rump and head. “We weren’t actually able to hold him until his umbilical line came out, which was about six days after his birth,” she says. Now they’re able to cradle him, skin to skin. And when it comes to his health, they’re looked to as experts.

This approach helps stressed-out moms and dads in very uncertain situations feel as though they have some control over their circumstances. More important, FIC leads to hugely positive results for the babies themselves: They’re discharged from the NICU three to five days sooner than their non-FIC counterparts, they gain weight 25 percent faster, and 80 percent of them (compared to only 45.5 percent of non-FIC preemies) are successfully breastfeeding by the time they leave the hospital.

Before Kelly delivered Charlie, doctors tried to prepare her for the worst. “I remember a doctor saying, ‘We’re just going to say this once, but there is the risk of fetal death.’”(While survival outside the womb is possible as early as 22 weeks, it’s not likely.) When Charlie arrived, squirming and mewling, after a 26-hour labour, Kelly and Jim were relieved to meet their “tiny, red, wrinkly, alien-like dude.” Many hurdles lay ahead: An ultrasound revealed some bleeding in Charlie’s brain (which, fortunately, has since been resolved). He would also battle infections, including necrotizing enterocolitis, a gut infection common among preemies, which required a transfer to Sick Kids hospital. But he continues to put on weight, and as of mid-September, he no longer needed a breathing machine.

“Sometimes, you’re in a big hospital unit and you feel like you’re in the way, or you don’t want to be a bother. I no longer feel like that—I feel like I have a role. This program is amazingly empowering,” says Kelly. “There was a new resident taking care of Charlie for the first time who turned to me and asked, ‘Is this normal for his breathing?’ They know you’re the one who’s there every day. They’ll pop by to give you test results. And at the end of rounds, they always give you the opportunity to ask questions. There’s a level of communication and respect that comes from being there all the time.”

Family Integrated Care was developed by Mount Sinai’s paediatrician-in-chief, Shoo Lee, who’s also the head of the division of neonatology at the University of Toronto.

“I think we’ve made a mistake in modern medicine,” says Lee. “We thought only trained professionals could look after patients. Over the years, we’ve removed the families from the care of not only babies, but patients, period. That was a mistake.” Lee was motivated to find a new approach, he says, after speaking with parents of children who’d been through the NICU. “Families told me they felt helpless and useless, because they come in and feel as though they’re not part of the team. They just sit there and watch the babies, but they’re not allowed to do anything.” In developing countries, he notes, parents are involved in their children’s care out of necessity—there’s a lack of nurses and resources. But to establish an effective precedent, he needed to find a system in a country with a social structure more applicable to Canada. As it turns out, Estonia has been working with a model similar to FIC since 1979—enlisting moms and dads as caregivers helped compensate for the resource shortages in the country after the dissolution of the Soviet Union.

In 2010, Lee spearheaded a research trip to Estonia with other doctors, nurses, social workers and parents. A year later, after a series of proposals and approvals, the pilot study was up and running in Toronto. He’s now leading a randomized trial underway in 19 other NICUs across the country, including Sunnybrook Hospital in Toronto, Victoria General Hospital in BC and Kingston General Hospital in Ontario. If the study is successful, FIC will become the standard of care for all preemies in Canada. 

The program has very clear criteria: Infants must be 33 weeks gestation max (the youngest patient ever admitted to the program was born at 24 weeks), they must be able to breathe on their own or with CPAP (this stands for “continuous positive airway pressure,” through prongs or a mask), and at least one caregiver must be willing and able to spend at least eight to 12 hours a day with the baby. Parents often take turns feeding, changing and just hanging out with their new arrivals. They also attend daily education sessions, and nurses act as supervisors and educators.

Jack Hourigan was the first mom to sign up for the pilot at Mount Sinai. She was 27 weeks and five days pregnant when her daughter, “Tenacious” Tess, was born in 2011, weighing two pounds, five ounces. Her first experience of the NICU, she says, was terrifying.

“I felt like an extra in Charlie and the Chocolate Factory. There were all these lights, sounds, smells and colours around us. The first week was really horrific: Tess had a lot of struggles, and I didn’t understand anything. I felt completely powerless.”

When the research coordinator presented Hourigan with the idea of FIC, it “finally made sense,” she says. “More skin-to-skin time, more education sessions, a schedule, more hands-on care. It gave me structure and purpose, and that’s exactly what I needed.”

I can relate to how Hourigan felt. This past April, my partner’s water broke at 34 weeks, and our son, Ezra, was born three days later. He was a good size—6 pounds, 3 ounces—but because he was six weeks early and extremely jaundiced, we spent eight days in the NICU at Toronto’s St. Joseph’s Health Centre. Ezra’s health may have been good, all things considered, but for his worried moms, the experience was gut-wrenching.

The NICU at St. Joseph’s is a level two neonatal unit. It provides care to infants born after 32 weeks who are in stable condition, with relatively minor medical issues. Their version of the care-by-parent model is less comprehensive than Mount Sinai’s. We bathed Ezra (with supervision), changed his diapers, fed him using a tiny bottle (and, if he managed to stay awake, at the breast) and took his temperature. We happily noted the check marks beside “Mom + Mom” on his chart, where the nurses monitored parental involvement. But we felt woefully under-informed and out of the loop. We weren’t invited to observe—let alone participate—in rounds, and we would have greatly benefited from even the most basic education sessions about preemie development. We felt trapped and anxious. We were unsure of what to watch out for, when we’d be able to bring him home, and what to do after we got there.

The FIC model doesn’t work for everyone. Kate Robson, the NICU parent coordinator at Sunnybrook and a mom of two preemies herself, notes that the program isn’t able to address all the barriers that keep parents away from the hospital. “If you have other children; if you are very sick yourself; if you are poor; or if you live far away, it’s very hard for you to be as involved in your baby’s care as you might want to be.” Her hope is that as FIC demonstrates the positive effects of parental presence on babies’ health, “we can make our systems kinder to families with hospitalized infants.”

Lee would love to see this model of care in place for parents of all sick children, not just parents of preemies. The biggest challenge is convincing the government to make more accommodations for families facing extended hospital stays, he says. “I think there are ways we can make it better. Parking should be free, and so should child care for the other children. These are things we have to do, because it’s good for society.”

The last time I visited the Goetz family, it was still several days shy of Charlie’s original September 20 due date. He’d been transferred to a third hospital, closer to Kelly and Jim’s house, and had fed from a bottle for the first time. He’s making steady eye contact now, and “he’s discovered his voice,” says Kelly, laughing. They’re looking forward to bringing Charlie home soon, and feel that their NICU experience has transformed their approach to parenthood.

“I don’t think the smaller things some parents might freak out about are going to bother us as much as they would have if Charlie had been full term,” says Jim. Changing diapers? A breeze, when you don’t have to navigate a tangle of tubing. Even screaming tantrums will be music to their ears. “When he fusses and cries?” says Kelly. “We love it! We love that he has the lung capacity now to do that.”

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