Daniela LaFace with daughter, Liliana, who is now three.
The long-term brain health of tiny, premature infants is a promising area of focus for Sunnybrook specialists
Liliana LaFace was born almost four months early. Her delivery on December 10, 2011, was just a few precious days beyond the earliest margins of survival outside the womb.
Like all micro preemies (infants born before 26 weeks' gestation), she was very tiny – only 1.3 pounds – and faced almost unfathomable adversity. Among Liliana's medical challenges were several conditions that affected her heart and lungs, as well as bleeding in her brain.
Just to stay alive, micro preemies require myriad complicated technological interventions that modern-day neonatal intensive care units (NICUs) offer: state-of-the-art incubators, feeding tubes, breathing tubes, ventilators, multiple medications and round-the-clock monitoring. To thrive and have a healthy brain, micro preemies need the anti-thesis of the typical NICU: a calm, quiet environment. This is where Sunnybrook stands out.
Each family is encouraged to do kangaroo care (holding the baby skin-against-skin), despite the life-saving tubes and wires that make it an intricate procedure. Sunnybrook is among pioneering hospitals dedicating significant resources to infant-parent bonding because it promotes brain growth. "Sunnybrook staff taught me that the more I held Liliana, the greater impact it would have on her future," says Daniela, Liliana's mom.
Finding the perfect balance between high-tech life-saving measures and low-tech brain-saving methods for tiny patients on the margins of survival – and sharing that knowledge across Canada and around the world – is a mission for Sunnybrook.
The hospital is taking a lead in promoting brain health of micro preemies in several ways. First, its NICU provides all families with single rooms, where babies receive kangaroo care and aren't disturbed unnecessarily by noise and light. Second, Sunnybrook's NICU has formed a multidisciplinary brain care team as part of an international network dedicated to researching, finding and sharing best practices. And third, brain care continues far beyond the NICU – until children reach school age.
"Our heightened focus on micro preemie brain health is new and exciting," says Dr. Eugene Ng, chief of newborn and developmental pediatrics at Sunnybrook. "We aim to become recognized as an international leader in the care of micro preemies, where mothers at risk of delivering very early come to be cared for, where babies' outcomes are exceptional and where health-care professionals come to learn from us. The goal is to not only improve survival rates in micro preemies, but also to reduce rates of developmental disabilities."
Photograph by: Jennifer Roberts
The hospital's NICU is the only Canadian unit participating in the Vermont Oxford Network (VON), a large, international venture to improve the quality of care for micro preemies. Sunnybrook is well-positioned to take part because it cares for one of the largest populations of these infants in North America, about 70 a year.
As part of the VON project, Sunnybrook's NICU has formed a brain care team that is determined to make a difference. Collaboration in the NICU – between highly skilled doctors, nurses, respiratory therapists, dietitians, pharmacists, social workers and physiotherapists – drives the effort to protect tiny babies' brains. "This is the epitome of interprofessional care," says Dr. Ng.
When babies are born extremely early, their brains are undersized, smooth structures, not having yet developed the volume or complexity that leads to the folds and crevices of fully developed brains. Blood vessels in their brains are very fragile and can break easily, causing bleeding in the brain. Micro preemies can also suffer from other brain-related complications, such as a buildup of cerebrospinal fluid, a restriction of blood supply or inflammatory injury to the white matter.
Despite gradual improvements in survival for even the most immature preterm infants, about 40 per cent of those surviving to discharge will have some kind of learning or behavioural challenge, while approximately a quarter will be diagnosed with a severe disability.
The goal is to create an environment for micro preemies that is as natural as possible, says Dr. Michael Dunn, a physician in the department of newborn and developmental pediatrics, who is on Sunnybrook's brain care team and is also a clinical expert on the VON project. "These premature infants are not inside their moms, where they are supposed to be. We can't duplicate intrauterine conditions, but we are continually tweaking what we do to get as close as possible."
Strategies to protect the brain from injury and promote normal development, growth and connectivity of brain cells include minimizing painful or disturbing procedures, protecting sleep and promoting parental involvement. "The more we bug them, the worse it is for their brains," says Dr. Dunn. "Quiet, darkness, as little handling as possible, breast milk and kangaroo care are positive stimuli that will help with brain growth and development."
One fascinating frontier is to understand and exploit the brain's capacity to adapt to injury. There are plenty of examples, says Dr. Dunn, of kids whose brains appear on MRI or ultrasound scans to be injured, but who seem to compensate by utilizing alternate processes or pathways; many will go on to high levels of education and performance. "How do we encourage plasticity and promote adaptation, so that function is optimized? We think that can start in the NICU," he says.
Again, research points to a "less-is-more" approach to coax neural networks to grow.
"We will always have kids who are left with consequences and challenges, and we have to ensure that these children and their families have the necessary support to perform at the highest level possible. However, we aim to shift the severe to mild and the mild to none." Liliana LaFace is now a lively, smart three-year-old girl. Her early birth did result in mild cerebral palsy, which – thanks to early identification by the Neonatal Follow-Up Clinic (see sidebar), followed by aggressive therapy – is almost imperceptible.
Daniela is very grateful for Sunnybrook's dedication to micro preemie brain health. The combination of providing private rooms, offering state-of-the-art technology, encouraging as calming and nurturing an environment as possible and a deep commitment to care throughout the preschool years has resulted in Liliana being the best she can possibly be.
"There aren't enough words to tell you how unbelievable I think the hospital is. I can't say thank you enough," says Daniela.
Predicting brain health
Have you ever noticed how much a baby wiggles, twitches and fidgets?
These movements are normal and a sign of good brain function.
Experts at Sunnybrook's Neonatal Follow-Up Clinic are using videotapes of micro preemies' movements to identify early on which babies may not be developing in a typical way, so that they can receive help.
Liliana LaFace, who was born at only 25 weeks' gestation, has had her movements closely monitored in the clinic at regular intervals since she left the Neonatal Intensive Care Unit (NICU) in early 2012. Within the first few months of her life, analyses of her movements showed she was weaker on the left side, an asymmetry not even noticeable to her parents.
As soon as this was detected, she began receiving therapy to strengthen and tone the muscles in her left arm and leg. "Liliana has mild cerebral palsy," says her mom, Daniela. "She has had so much therapy that you wouldn't notice it."
The videos are part of a tool called the Assessment of the Quality of General Movements (AQGM) being tested in a study at Sunnybrook. It is a cost-effective, minimally disruptive and accessible tool, which has not existed before. "In this study we will examine video movements at two stages of infant development and determine if the patterns help with identification of future disability," says Dr. Jessie Van Dyk, a neonatologist and fellow at Sunnybrook and lead author of the study.
"How the baby moves spontaneously tells us a lot about the integrity of the brain," says Maureen Luther, a pediatric physiotherapist in the NICU and Neonatal Follow-Up Clinic. "We are looking for variety, complexity and fluency." Luther is one of only a handful of Canadian physiotherapists with certification in several infant assessment tools, including the AQGM. Babies who have no variety or complexity in their movements, she says, may be on a path toward developing cerebral palsy, autism spectrum disorders or hearing and vision problems.
The sooner these issues are identified and communicated, the more the family can benefit from special accommodations, aggressive physiotherapy, occupational therapy, family training and social services. "I wouldn't have wanted to wait until Liliana was five to find out her diagnosis when we could have been helping her all that time," says Daniela.
"The identification of a tool to assess early brain function is the Holy Grail of infant development" says Dr. Paige Church, director of the Neonatal Follow-Up Clinic.
The clinic is unique because it is one of the only centres in Canada that follows NICU "graduates" up until school age. Staff is passionate about helping children reach their best possible function, as well as helping parents deal with challenges and educating teachers on issues of prematurity. "We want brains to be as functional as they can be and to have as great an outcome as we can," says Dr. Church. "Our goal is to have kids enter Grade 1 and the early grade-school years healthy and happy." •
This content was produced by The Globe and Mail's advertising department, in consultation with Sunnybrook. The Globe's editorial department was not involved in its creation.