Jennifer Tano slips her hands through the openings in the isolette, gently snugging into place what seems like an impossibly tiny diaper on her infant son Thomas. Her eyes scan an overhead monitor that tracks his vital signs, taking in his pulse and respiration rate with what has become practised ease.
That wasn’t the case when Thomas was born less than two months ago. Delivered prematurely by emergency C-section, he weighed a mere two pounds, six ounces after being in the womb just a little over 27 weeks.
“It’s so different from having a full-term baby,” says Tano, whose 14- and eight-year-old daughters were comparative behemoths at birth, weighing 7-pounds-10 and 8-pounds-6 respectively.
“You see this tiny little baby and you’re so afraid to touch him … his little diapers, worrying about hurting him, he seems so fragile,” says Tano, 35.
“But they’ve taught me how to handle him.”
“They” are the nurses and other members of the neonatal intensive care unit at Mount Sinai Hospital in Toronto, which has shifted the paradigm of how premature and sick infants are looked after with its family integrated care initiative.
Parents have long been encouraged to spend time with their babies in the NICU, but they were typically more observers than participants, often feeling helpless and lost as they sat by their child’s isolette watching every breath, trying to make sense of the monitors and startling at every bell or buzzer around them.
“With family integrated care, we have done something quite different,” explains Dr. Shoo Lee, pediatrician-in-chief and director of the Maternal-Infant Care Research Centre.
“What we’ve done is to say that for all babies in the NICU, the parents should be the primary caregivers, not the nurses. And the nurses are really teachers to the parents.”
The program was instituted following a 2011-2012 pilot project in which the parents of 40 newborns were asked to spend a minimum of eight hours a day in the NICU and tasked with the overall management of their child’s care.
That included bathing and changing diapers, monitoring the infant’s vital signs, and recording feedings and weight gain on their medical chart. Nurses were responsible for the medical side of care — looking after feeding tubes, adjusting ventilation apparatus and administering medications.
The babies’ progress was compared with those whose care was primarily provided by nurses, and Lee says “the results were phenomenal.”
“There was a 25 per cent improvement in weight gain of the babies who were looked after by the parents,” he says. “Breastfeeding rates doubled from 40-something per cent to over 80 per cent. Infection rates fell from 11 per cent in the nurse group to zero in the parent group. Treatment errors dropped by 25 per cent. Parental satisfaction went up, parental stress went down.
“So these were good results.”
While parents are encouraged to cuddle their infants for periods throughout the day — skin-to-skin contact not only provides comfort but also promotes a baby’s physical and neurological development — nurses and doctors keep handling to a minimum to avoid transferring germs from one little patient to another.
“Parents are the ones in charge, so nobody gets to touch their baby without their consent,” stresses Lee.
Still, he concedes there was initially resistance to the reorganization of duties from many of the nurses in the NICU, which can accommodate 57 underweight or sick infants at any one time and cares for about 1,200 per year.
“Many nurses felt that the parents could not do this job, that this was their job: the parents were not trained, we were trying to steal way their jobs, it was just a trick to try to reduce the number of nurses,” he says.
“But during the course of the study, all the nurses were watching, and now the majority think it’s the right thing to do. They saw how good it was for the parents and the babies.”
The role of nurses has actually expanded, Lee says, because now they act more as teachers and supervisors for parents, instead of doing all the hands-on care.
Nurse Li Chen, a 12-year-veteran of the NICU, agrees integrating parents into management of care was a big change, especially for some of the older nurses, although even before its introduction they were teaching parents how to hold their infants, change diapers and check temperature.
“It is very difficult when they have a sick baby here, and we still try to allow the parents to do as much as they can,” Chen says.
“I think the program helps us to help parents to build up their confidence so they won’t feel that they are helpless, hopeless. They are involved. They are part of the team. They feel they’re involved.
“As nurses, we think it is really working well for all of us.”
And it’s not only nurses who lend their expertise: neonatologists, pharmacists and other medical staff contribute, holding classes outside the unit on issues that parents may run into during their baby’s stay in the NICU and once they are discharged home.
“With this family integrated care program, they really taught us how to deal with prematurity. It was a good thing because I learned a lot from them,” says Silvia Matti, whose daughter Simona was born 12 weeks early, barely tipping the scale at two pounds, 10 ounces.
“She would have fit in a bowl, she was so tiny,” Matti, 43, of Maple, Ont., says of her first child, born last October.
The classes not only give parents a break from the NICU, but also allow moms and dads to gain support from each other during what is an emotionally trying time.
“That really helped because we learned from each other,” says Matti. “You got your mind away and you got to sit with some of the other mothers. I’m still friends with them.”
Lee says the program also includes volunteers — parents who had children in the NICU in the past, who offer their experience and support to new parents now dealing with a preemie or sick newborn on the unit.
“They have a very different view of things and experience of things that other people do not have and they relate to each other better,” he says, adding that parents have even taught neonatologists like him a thing or two.
One mother said she didn’t want her preemie put on an assisted-breathing device because she knew it could be harmful to the baby’s brain development over time, despite the fact he was having episodes where he would stop breathing, called apneas.
Lee says the mother had noticed that clusters of apneas occurred after her infant was given an iron supplement, and she thought it was because of its foul taste. “I’ve tasted it and it tastes terrible, it tastes like rust,” the mother said.
“So the nurse changes it to strawberry flavour … and guess what? No more apneas,” Lee says.
“I asked myself how many babies have been ventilated because we didn’t realize they didn’t like the taste. The baby probably gagged on the taste and stopped breathing.”
Parents also have another responsibility as part of the care team — letting doctors know how their baby is progressing during daily medical rounds, a role that was unheard in the past.
“When the doctors come around for their rounds in the morning, when they have their discussions,” observes Tano, “being part of that discussion really helps because you don’t have all these what ifs or all these unanswered questions.
“They’re talking about, ‘OK, what’s next for Thomas? What’s going to happen over the next week?’ And so I know that when they know that.”
Being part of the family integrated care program has relieved much the anxiety of dealing with a premature infant and spending so much time in a hospital unit where critical care is the norm.
“Because you’re in here and hearing all these bells and whistles going off and not knowing what they mean,” Tano says. “During the first couple of weeks, any time I heard any kind of beep I was just beside myself. I didn’t know what to do. Was it him? What did that mean?
“But now that I know what they all mean, I’m a lot calmer. I can come in here and actually smile as opposed to crying like I did for the first three weeks.”
Lee believes the program, which he hopes will become standard in NICUs across Canada, illustrates the mistake that was made in overly medicalizing infant care by “removing the parents from the nursery.”
“All we’re doing now is actually bringing them back in, giving them their rightful place where they should be,” he concludes.
“If you think about it, they’re the best caregivers for their babies — and who is more dedicated to looking after their baby than themselves?”