16 Jan Esa’s story
Christopher Sue felt confident and happy when his wife Angelica became pregnant for a second time. The couple were already parents to a three-year daughter who was thriving and excited to take on her new role as a big sister. Then, at 27 weeks and at two pounds and six ounces, Esa was born.
“I was unsettled and uneasy, with mixed emotions of joy and sadness,” explains Christopher. “As a parent, one of your biggest concerns is for your child to be ‘normal’, and to grow ‘normally’, meeting standard health expectations. With a premature baby, it is a different scenario.”
Esa spent 17 weeks in Sunnybrook’s neonatal intensive care unit (NICU), a frightening and intense time for her parents.
Flash forward eight years. Esa is entering grade three and giggles with her older sister over an inside joke. She leans down to help her two younger sisters with an alphabet toy. More laughter ensues.
Esa has visited Sunnybrook’s Neonatal Follow-Up Clinic, one of the only clinics in Canada that follows children into grade school, for assessment of her physical, motor and cognitive development each year since birth. One of her younger sisters, Rosa, was born weighing 1280 grams at 29 weeks in 2014, and is also followed by the clinic.
“We work with families so that together we can provide the care and support each child needs to be healthy and ready to learn,” explains Dr. Paige Church, neonatologist and director of the Neonatal Follow-Up Clinic at Sunnybrook, and also a developmental behavioural pediatrician. “Bringing a baby home is an adjustment for any family, and this can be intensified when the baby was born prematurely or was ill. We believe that parents are the true experts when it comes to their children.”
Angelica and Christopher agree with this approach to care. “Before our first visit to the clinic, I wasn’t sure I wanted to hear a list of the things my daughter couldn’t do,” says Angelica. “The reality was so different: I was assured the clinic was there to support and help us in the early years to ensure Esa’s future would be a comfortable and healthy one.”
In addition to neonatologists, Sunnybrook’s Neonatal Follow-Up Clinic also has a nurse practitioner, registered nurses, physiotherapist, occupational therapists and a doctor of psychology on the team. The clinic is the only one in Canada to employ a behavioural analyst, focusing on each child’s individuality and the aspects of behaviour that make each baby unique and different. This assists clinic staff in understanding each child’s preferences and vulnerabilities and the areas where she may need support.
Esa and Rosa are top-of-the-class learners for their ages, and are striving for more. “The clinic helped shape me to become a courageous, confident and caring mother,” says Angelica. “The first few years are so crucial to the development of any child, and the Sunnybrook clinic allowed us to start off on the best foot. The whole family is ready to take on whatever may come because we tackle things together.”