Photo by John Ulan
Maiya Bull, age three months, is wearing a pink striped onesie and lying on a baby mat, her dark eyes fixed on toys dangling from the mobile play tent above her. At the kitchen table, her eight-year-old brother, Ethan, sets aside his latest art project and darts into the living room to give her a soft tickle on the sides of her ribs. His face looms over hers briefly, smiling. Maiya exhales rhythmically three or four times in the classic chortle of a happy infant. Her heart is beating at a steady 110. This wasn't always the case.
Months earlier, when Rosa Bull was 24 weeks pregnant with Maiya, she watched her obstetrician's brow furrow during a routine prenatal appointment. The doctor said the baby's heart didn't sound right and another examination revealed it was beating at just 46 beats per minute, rather than the usual gestational rate of 120 to 150. Dread began to gnaw at Bull and she found herself impatient for answers. Her doctor sent her to the Lois Hole Hospital for Women for further tests.
The Lois Hole hospital in Edmonton is the research and clinical home for Western Canada's highest-risk pregnancies. It houses a neonatal branch of the Stollery Children's Hospital and receives funding from the University of Alberta's Women and Children's Health Research Institute. The institute exists in response to the relative dearth of research into the health of these groups, and helps researchers innovate and address the gaps.
"They couldn't find a steady heartbeat," Bull says of her first fetal heart test at the Lois Hole hospital. "It was all over the place, sometimes disappearing altogether." Later that day, she learned that fluid was collecting around the baby's heart and lungs. Unless they could speed up the tiny heart and improve its function, the baby would die in utero. Bull and her baby were placed under the care of Lisa Hornberger, a UAlberta professor of pediatric medicine and the Stollery's director of fetal and neonatal cardiology. "Dr. Hornberger found that Maiya had complete heart block," Bull says.
Heart block is a disorder of the cardiac rhythm that, in newborn and unborn babies, is often associated with the presence of an autoimmune disease in the mother. (Bull is being investigated for one such disease: lupus.) As part of a clinical trial, Hornberger gave Bull a finely tuned balance of medications to quicken the baby's heart and reduce damage without creating serious problems for Mom. Treatment boosted the baby's heart rate into the 50s and corrected the fluid buildup, which took her out of danger. It sped up Bull's heart, too. "I didn't get a lot of sleep," she says. An understatement, says her husband, Dave.
But the couple knew they had landed in the right place. Hornberger's research, like that of many investigators studying the health of women and children, is supported by the Women and Children's Health Research Institute. Hornberger's work has provided better care for worried moms and increased the survival rate of unborn babies with some cardiac conditions from 45 per cent to more than 95 per cent. Recently, the institute received a gift of $54.5 million over 10 years, including $14.5 million from the Royal Alexandra Hospital Foundation and $40 million from the Stollery Children's Hospital Foundation - the largest donation in UAlberta's history.
Bull delivered Maiya at 37 weeks at the Mazankowski Alberta Heart Institute, an unusual place to have a baby but necessary because there was a possibility the baby would have cardiac complications shortly after birth.
After delivery, Bull was transferred to the Lois Hole Hospital for Women for her own postpartum health and Dave stayed with Maiya, who was born pink and perfect. But as the day wore on, the infant's limbs started to darken as her heart slowed down. Less than 24 hours after birth, Maiya was wheeled into surgery to receive a pacemaker. Because of her tiny size, it's a simpler device, but when she's bigger she'll get a more sophisticated one that allows a natural range of heart rates.
Research like the kind that saved Maiya's life will continue for at least another decade, thanks to the Women and Children's Health Research Institute and the generous support of donors.