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Written By: Janessa Bishop
Photos By: Galen Brown

It’s a curious landscape — one that parents describe as bewildering, terrifying and other-worldly. Banks of equipment and pulsating monitors, IVs and electrodes, a commotion of beeps, alarms and whirring machinery all vie for attention; an eerie sense of calm descends as a team of doctors and nurses act with speed and purpose; and at the centre of this swirling medical universe is your own tiny, fragile infant.

On the heels of one of the most emotionally-charged moments imaginable — the birth of a child, a new parent’s first encounter with the Newton Glassman Charitable Foundation Neonatal Intensive Care Unit (Glassman NICU) at Mount Sinai Hospital can be overwhelming.

“Many parents describe the NICU like entering a spaceship,” says Dr. Karel O’Brien, staff neonatologist. “This sort of environment is so out of their normal context and they feel completely disorientated and scared when they first arrive. In addition, they’re worried about their sick baby and have huge anxieties about their baby in this unfamiliar environment.”

Grayson Pope weighed a mere one pound, 14 ounces when he was born at 26 weeks and three days. When first transferred to the Glassman NICU, he was in an isolette surrounded by tubes and machinery. “All I wanted was to hold my baby — it was heartbreaking,” says Grayson’s mom, Ashley Haynes.

Above: Baby Grayson sleeps in an an isolette. At birth, he weighed just one pound, 14 ounces.

Every year, more than 1,000 of the most vulnerable babies are cared for in the Glassman NICU. They may be full-term infants who became unwell after delivery, newborns with congenital abnormalities that were diagnosed prior to delivery, or fragile preemies who need developmental support until their due date. At the Glassman NICU, up to 57 babies can be cared for at any one time by a professional team that includes doctors, nurses, social workers, respiratory therapists, dietitians and pharmacists, along with parents themselves.

Family Integrated Care — in the NICU and beyond

In 2015, the Glassman NICU adopted a Family Integrated Care (FICare) model in which parents become an intrinsic and indispensable part of their baby’s care team.

“Family Integrated Care is actually a change in paradigm,” notes Dr. Shoo Lee, Chief of Paediatrics at Mount Sinai Hospital. “It’s a different way of providing care from what we’re used to in a hospital setting. For many years, families said they felt overwhelmed when their baby was admitted to the hospital and, in particular, to the NICU. Before FICare, parents didn’t understand what was going on and felt like they couldn’t do anything for their babies.”

The Mount Sinai FICare program — the first of its kind in Canada — was developed after studying a similar program in Estonia where, as a result of a shortage of nurses, mothers were brought in to care for their babies themselves. During the pilot project at Mount Sinai in 2010, hospital staff observed that babies experienced better weight gain and that breastfeeding rates improved. In addition, parents felt less stressed, more involved and happier.

Parents begin their journey with FICare as soon as their baby is admitted to the Glassman NICU. They help to monitor their baby, provide reports during medical rounds and participate in family meetings with the entire care team regarding their baby’s health and progress. Through a parent education program, they can also attend classes given by veteran Glassman NICU parents who return to the hospital to share their own care experiences.

“ I think the single most important thing parents need to know about Family Integrated Care is that they can do something nobody else can for their baby.”

- Dr. Karel O’Brien, staff neonatologist

Nurses play a key role as parent-educators in the FICare program. “We’re educators, we’re supporters and we’re cheerleaders for the parents,” says Janet Narciso, parent resource nurse in the Glassman NICU. Nurses are involved in bedside education — helping parents hold their baby during skin-to-skin sessions for example. Once the baby is healthy enough, they also step in to assist with activities like breastfeeding, non-nutritive sucking and bathing. “Ultimately, our role is to support the families during their stay, provide them with the information they need and give them the confidence to care for their baby once at home,” says Janet.

“The NICU becomes like a class for parents, where they learn how to deal with medical professionals and how to advocate for their infant,” says Dr. O’Brien. “Those skills continue way beyond the NICU and continue post-discharge, where parents have no difficulty being able to speak to their paediatrician or their family doctor, explain what’s happened with their infant and what’s going on now. “I think the single most important thing parents need to know about Family Integrated Care is that they can do something nobody else can for their baby.”

Above: Janet Narciso, a parent resource nurse, reviews some helpful information with Ashley.

FICare has become the standard of care in the Glassman NICU, and Mount Sinai is leading training workshops to help hospitals in Canada and around the world adopt this model. “We are looking to expand this program to community hospitals where babies are often transferred after their stay in the NICU,” says Dr. Lee. He believes this philosophy can play a role in other care settings, too. “We also think this model of care could be applied to other areas of paediatrics, as well as to chronic care, palliative care and adult care,” he says.

“Family Integrated Care taught us so much about Grayson. We learned about the importance of being involved in his care, we got to know all of his cues,” says Ashley. “When we go home, we’ll know how to monitor his breathing, heart rate and to look for discolouration in his skin. We go home knowing so much more about our baby and how we can be good parents.”

Grayson was discharged from the hospital on August 17, 2017, 11 days before his due date, weighing a healthy five pounds, nine ounces.

For his parents, the Glassman NICU proved to be a haven of exceptional care — and caring. “Being in the NICU is a really scary situation, but with the help of the nurses, doctors, social workers and the entire team, you can get through it,” says Ashley. “You’re a lot stronger than you think and you can help your baby get better by being involved in their care.”