THE PROBLEM WITH PREEMIES
Amélie Bisson considers her family fortunate that daughter Dalia is healthy, a year after she was born almost 13 weeks early. Bisson is helping to organize an Ottawa event for World Prematurity Day on Sunday at The Ottawa Hospital’s General campus.
Amélie Bisson’s first look at her baby daughter was on a small screen at the back of a camera. Baby Dalia, born at just 27 weeks gestation and weighing only two pounds, had been rushed directly from the delivery room at The Ottawa Hospital’s General campus to the intensive-care nursery before Bisson could even see her. The baby’s father snapped a picture to show the anxious mom. It would be hours before Bisson would see her tiny baby in person — hooked up to high-tech equipment in an incubator — and days before she could hold her: 11, to be exact. “It was just horrible,” she says.
Almost a year later, Dalia is a robust 17 pounds and doing well. “We are lucky,” says Bisson. “For now, everything is super. Physically, she is 100 per cent. She is just such a joy.”
But, like other parents of preemies, Bisson and her partner know that they could be dealing with the results of their baby’s fragile early start with complications that show up later, such as learning difficulties. The challenges of prematurity, for parents and for the health system, can linger long after the early days of critical care in neonatal intensive care units like the one at the General campus.
At a time when premature births are on the rise in Canada and around the world, research to reduce complications and prevent premature births hasn’t kept pace, nor has support for parents.
Like many parents, Bisson feels nothing but gratitude for the health professionals who cared for her baby for the 86 days she spent in hospital. “They are miracle workers. Without them, she wouldn’t be here.”
She wants to thank them, and also to draw attention to the challenges and costs of prematurity. Both are reasons why Bisson helped organize Ottawa’s first event to mark World Prematurity Day, to be held Sunday at the General.
She is hoping the event raises awareness about how common prematurity is. “It is to give these babies a voice so the world can understand one out of 10 babies in the world is born prematurely. We need to have more research and also more information for parents to understand the complications.”
The rate of prematurity in Canada was 7.78 per cent in 2010, and it has risen in recent decades. The growth of multiple births, related to reproductive technology, accounts for some of the increase in prematurity, as do growing numbers of older first-time mothers. Both are risk factors.
But, in many cases, the reasons are not clear. Bisson said doctors didn’t know why her daughter arrived 13 weeks before she was due.
But what is known, in Canada and around the world, is that preterm births are dangerous and on the rise. Around the world, they account for almost half of all newborn deaths. In Canada, prematurity is the biggest reason for pediatric hospitalization. Babies born before 37 weeks gestation have increased risk for serious infections, cerebral palsy, respiratory, vision, hearing and developmental problems. And, according to the Global Alliance to Prevent Prematurity and Stillbirth, there is a large disparity between the costs of preterm births and research dollars dedicated to preventing them or reducing complications.
Katharina Staub, the Edmontonmother of five-year-old twins who were premature, founded the Canadian Premature Babies Foundation in 2012 to increase public awareness about the issue and provide support for parents. When her children were young, she said, “I didn’t feel I had a lot in common with other moms and their birth experiences.”
Staub notes that parents of preemies often feel guilt, experience trauma and, frequently, financial stress. Her organization has lobbied the federal government to have parents of premature infants included in the recently passed federal bill that makes employment insurance benefits available to parents of critically ill children. For parents of preemies, this applies during the period they are in the hospital, so that they can take maternity leave once their children come home from the hospital.
Staub says there should be more research into preventing and reducing the effects of preterm births. And she said parents, who often have difficulty accessing services for their children once they have left the hospital, need more support.
Dr. Brigitte Lemyre, a neonatologist at The Ottawa Hospital, acknowledges that sometimes families “feel like they have fallen off a cliff” when they go home from the hospital with a still-fragile baby.
“Smaller babies have increased needs with multiple and sometimes complex medical issues,” she said, and typically the followup clinics for premature infants are “grossly underfunded.”
Still, although premature babies — some as young as 23 weeks gestation — will sometimes live with serious health complications, Lemyre said research has demonstrated that the parents of these children and the children themselves rate their quality of life as high.
“It’s a good lesson.”