What can parents of babies born severely prematurely expect? More than 30 years ago, when Dr. Saroj Saigal first decided to investigate, no one really knew the answer. Thanks to her work over the intervening decades, they do now.
When Jennifer Zallitack was born, she weighed fewer than two pounds. Born in the night, just 30 weeks into her mother’s pregnancy, she arrived before the ambulance did, and while she survived the duration of the ride to McMaster, her survival was anything but assured. After being given an honest assessment of what they might reasonably expect, her parents requested that Jennifer be baptised at the hospital, no doubt girding themselves for the worst.
Even as Jennifer survived that first night, her first few days and then through her first birthday, the uncertainties no doubt continued. Her parents, on any number of occasions, would likely have asked, “What should we expect?” Yet, when they did, physicians at the time would have been hard-pressed to answer with any level of confidence. Truly, they didn’t really know. Will this child be able to learn, grow, function and enjoy her life in any way near or equal to that of her peers born at term? Will she transition successfully into adulthood, getting a job, living independently and having a family? What quality of life might they reasonably expect for her?
The answers physicians typically gave were simply based on their own personal experience along with an equal measure of conjecture, something which encouraged Saigal to pioneer one of the few— then or now—population-based studies of extremely low birth weight infants. The study consisted of following 166 babies born between 1977 and 1982, year after year, through childhood, adolescence and into adulthood. It wasn’t research for the impatient, although the payoff was certainly there for those who were able to wait. The study became remarkable not only for the decades of findings it has produced, but also in the consistency of that data.
Jennifer Zallitack is one of the initial group, now in their 30s, that Saigal has studied at intervals throughout their lives. The study has a 90 per cent return rate in follow up — something that, as longitudinal studies go, is itself remarkable.
“She started a follow-up clinic when nobody did it,” says Saigal’s colleague Dr. Christoph Fusch. “Now everybody does it. And that’s good, because in the end, the proof is in the pudding. [When we ask] ‘How is the baby doing?,’ it’s not just about survival. It’s about intact survival.” It’s also about quality of life, things that can be accurately gauged only over the long term.
And how are the children doing now, more than three decades later? “They are doing better than we ever expected them to do,” says Saigal, a finding that she has shared with the world. Her 2006 paper on the results of the study as it approached its 30-year benchmark has been cited in hundreds of papers and has changed, quite literally, how physicians view the effects of prematurity. Each year, more than 12 million babies are born premature and survive into adolescence. Our understanding of how they will do is that much greater thanks to the work of Saigal and her colleagues. And when parents ask the million-dollar question — “What can we expect?” — we can tell them.
In recognition of her work, Saigal received the 2011 Douglas K. Richardson Award in Perinatal and Pediatric Healthcare Research, sponsored by the Society for Pediatric Research. This award recognizes the lifetime achievements of an investigator who has made substantive contributions in an area that leads to improved health care delivery to the neonatal/pediatric population. Saigal is the first Canadian ever to have received the award.
The children, now adults, who took part in the study don’t just come back to the clinic for follow-up; many also return from time to time just to visit a place and a person who has been so important in their lives. That was especially so on Nov. 17, 2011, when Jennifer Zallitack and other alumni of Saigal’s study came back to McMaster in celebration of World Prematurity Day. No doubt, they are people who truly had something to celebrate.
Photo courtesy of the Hamilton Spectator