Seema Patel caring for her son Kaelen as part of a new program putting the parents in charge of their premature babies at the neonatal intensive care unit of Mount Sinai Hospital in Toronto, Feb. 11, 2013.Fernando Morales/The Globe and Mail
At first glance, it could look like the moms in Mount Sinai Hospital's Level II nursery are just visiting their premature babies, wearing their street clothes and winter boots. But many of them will be spending about 12 hours here, grilling the doctors on rounds, attending meetings with medical and developmental experts and being the primary caregivers for their infants. It's all part of a program started at the Toronto hospital in 2011, called the Family Integrated Care Program.
Where parents used to have to sign into a neonatal ward as visitors, only to sit beside the babies, these parents can show up any time and spend hours holding their little ones. Having agreed to spend a minimum of eight hours a day, they become well-versed in the medical minutiae of preemies' respiratory, feeding and other issues. They make all medical decisions for their babies. The only thing they don't do? Medical procedures. And it's enormously beneficial for the infants.
In a pilot study conducted from 2011 to 2012, babies in the program grew 25-per-cent faster than the babies looked after by nurses. Breastfeeding rates went from 45 per cent to 82 per cent. Infection rates fell from 11.5 per cent to zero in the parent group. Medication errors went down.
"We were astounded," says Dr. Shoo Lee, the principal investigator of the study and the pediatrician-in-chief at Mount Sinai. He will be beginning a large randomized control trial in 16 hospitals across the country this spring. If the results are as good as the pilot trial, he says, this will become the standard of care across the country.
He was inspired to create the program after visiting Estonia, where, due to nurse shortages, parents have been caring for their premature babies around the clock for decades with excellent results. What Lee has learned is that this may be due to parents noticing things that medical staff do not, because they never leave their babies' sides. In one case, when an infant was having apneas, or would frequently stop breathing, the recommended treatment was intubation and being put on a ventilator.
"The mother said, 'No. I know ventilation is bad for my baby's lungs. And by the way, I have noticed whenever you give that iron solution to my baby, my baby gets lots of apneas. And I bet it's because my baby doesn't like the taste,'" recalled Lee. And after the flavour was masked by strawberry flavouring, the apneas stopped.
"I am thinking, 'How many babies did we intubate because we did not realize they don't like the taste of the medicine?' It's not because the nurse is bad. It's because the nurse is not there all the time. The mother is. She knows her baby. That's the difference."
Dr. Horacio Osiovich, the head of neonatology with BC Women's Hospital & Health Centre Neonatal Intensive Care Unit, says his team has been implementing many similar protocols. He's not surprised by Lee's findings.
"It's obviously the way to go. What they were able to do was to show that it works," he says.
Helen Schwartz and her daughter Gabriella
Birth story: Gabriella was born at 27 weeks and two days after Schwartz, who lives in Maple, Ont., experienced blood-pressure problems and her placenta began working in reverse, drawing much-needed blood away from the baby. "I heard her cry for just a second before they took her to the NICU [neonatal intensive-care unit]." She weighed 800 grams (1.7 pounds). Now 41 weeks old, she weighs 4,040 g (8.9 pounds). In addition to respiratory problems, she's been to the nearby Hospital for Sick Children for eye surgery.
The schedule: Schwartz arrives at 7:30 or 8 a.m. Her husband joins her at about 4:30 after he finishes work and they leave together at 9 or 10.
Progress report: "The nurses made me feel confident in this environment, having people by your side, explaining all the medical stuff and issues your child could have. Learn all the signs they give. They're different than newborns. You have to take it one day at a time. Even when it's getting better, the next day, things could go down again. You just have to hope that they're stable. I've learned not to always look at the monitors. If she's pink and breathing, she's good.
"When she's relaxed, her body can grow. When she's aggravated, it's going against her. Sometimes you have to figure out what she needs and how to position her."
Seema Patel and her son Kaelen
Birth story: Kaelen and his twin brother, Shael, were born at 25 weeks and three days after weeks of bed rest, due to a problem with Patel's shortened cervix. They weighed 907 g (two pounds) each. At 39 weeks, they now weigh seven pounds. His twin, Shael, went home two weeks ago. Kaelen is almost there, but he "very randomly doesn't remember to breathe. It might be acid reflux, but every time it happens it buys him another week here."
The schedule: The Toronto-based genetics counsellor usually comes in at 11, stays till 4. Back at 7:30 to 10. Her husband works from home and can join her often.
Progress report: "For the first week you're just shocked because this is so hard. But one of the residents told me for these babies to breath is like running a marathon. We need to be their cheerleaders. We have to be strong for them. You develop a routine. You're happy to be coming to see your kid, taking his temperature, changing his diaper. Every little step, like a bigger crib or being able to dress him in clothes [is exciting]. From early on, the nurses encouraged us to hold Shael and Kaelen together and put them in the same crib – they seem to really enjoy being back together again.
"I've been coming in early so I can be here for rounds. With encouragement from our primary nurses, I felt confident I could say things like, 'Why not try and offer him CPAP ["continuous positive airway pressure" mask] today and see how he does?"
Cinnamon Rogers and her daughter Bree
Birth story: Bree was born weighing four pounds on Jan. 18 – a little more than two months early. Rogers, who was suffering from pre-eclampsia, had to be airlifted from Lindsay, Ont., to Mount Sinai. She was suffering from liver and kidney failure. Just out of the incubator, at Bree's last weigh-in she was 2,324 g (five pounds, two ounces). "We did a little tap dance."
The schedule: Arrives at 7:30 a.m. and is here until 9 or 10 until Rogers, a mental-health care worker, goes "home" to the the nearby Ronald McDonald House.
Progress report: "I have leukemia and I've raised a child with autism, but this was the first time I've felt I had no control. This program gave me a sense of control. It makes me feel like I'm parenting – even something as simple as giving her a sponge bath. She's been in clothes for two days now. Dressing her is an accomplishment.
"I can clarify her condition to doctors doing rounds. She has an IV burn on one leg and cellulitis on the other from her PIC line [peripherally inserted central catheter]. People were getting confused."
Interviews have been condensed and edited.