In Canada, one in every 10 babies is born prematurely, and yet many parents who've watched their children enter the world too early say it is an isolating experience that fellow parents really don't understand.
Jack Hourigan, a writer and parenting expert whose daughter Tess was born unexpectedly at 27 weeks, says there are still a lot of myths about what it means to raise a child who was born premature.
"People think once you leave the NICU (neonatal intensive care unit), then everything's fine, that you head home and the story's over. But the repercussions of prematurity continue," she told CTV's Canada AM Monday.
Most babies born prematurely progress well. However, some can develop problems later in life, including delayed language development, visual or hearing impairments or learning disabilities.
Many of these issues don't become a problem until the children reach school age, Hourigan says. And while many hospitals offer follow-up clinics for children born prematurely, those programs often end once the child reaches three. Hourigan would like to see that changed so that the programs offer support to parents for longer.
On Sunday, the March of Dimes helped commemorate World Prematurity Day by lighting a number of Canadian landmarks in purple, including the heritage building in Ottawa, the Muttart Conservatory Pyramids in Edmonton and the CN Tower in Toronto. The move was meant to honour all prematurely born babies and to raise awareness that prematurity remains a public health concern.
The World Health Organization defines prematurity as any birth before 37 completed weeks of gestation. While there has been stabilization in the preterm birth rate in Canada since 2004, those numbers haven't fallen either.
Some of the reasons why babies are born premature are well-known. Teen mothers are at greater risk for delivering premature babies; diabetes and obesity in pregnancy also increase the risk, as does smoking. And twins and other multiple births have an increased risk of being born too early, as well.
But most premature births remain unexplained and happen without warning.
Kate Robson gave birth twice to preterm babies. Her older daughter Maggie, now 8, was born extremely premature at 25 weeks and weighed only 500 grams -- just a fraction of the 3,200 grams considered average in Canada.
"When I held her against my chest, you couldn't even see her under my hands," she remembers.
Maggie spent four months in hospital, much of it in an incubator attached to several machines and monitors. Robson says whether a baby is in the NICU for five days or five months, the experience can be wrenching.
"A lot of preemie parents are at risk for depression or PTSD, because being in hospital, it's really, really hard," she says.
Robson is now a board member on the newly-created Canadian Premature Babies Foundation, which aims to give premature babies and their families a voice across Canada, as well as to support the best standards of care for premature babies.
The foundation also works to encourage research to find ways to help prevent preterm birth.
"That's so that we can find out why are babies born early, because we haven't really been able to move the needle on that in the last 10 years in Canada," she says.
"We have been able to improve survival rates, and that's wonderful news. We've been able to decrease the rates of major disabilities, and that's wonderful. But we also need to focus on the minor disabilities as well."
Hourigan, meanwhile, now works at Mount Sinai Hospital in Toronto as a Parent Partner, helping other families navigate the NICU.
She's headed to Ottawa Monday to thank MPs for bringing in Bill C-44, which extends employment insurance benefits to 52 weeks for parents of critically ill children.
"That's monumental and wonderful," she says. "And we need more things like this, because the support systems financially, and every other way, are so important."
