Like a lot of Canadian kids, seven-year-old Gage will be playing lots of hockey and skiing this winter.
What sets him apart is his start to life. Gage was born at 22 weeks and five days and spent four months in Sunnybrook’s neonatal intensive care unit (NICU).
“It hasn’t been an easy path, but it has been so rewarding,” says Heather, Gage’s mom, who explains Gage has low vision, autism and receives therapy for mobility issues. “He has disabilities but we make the best of it and celebrate every milestone.”
Dr. Eugene Ng, Medical Director of the NICU at Sunnybrook, is on the frontline when an extremely premature baby is about to be born. “Caring for a micro-preemie like Gage draws in a whole support from the inter-professional team so we can ensure the best possible outcomes for these infants,” says Dr. Ng. “For example, we give steroids to the mothers at the right time, to help babies’ lungs develop, which helps reduce the risk of serious complications and death. One of the most important steps centres on discussions with families about what having a premature baby means for them.”
Dr. Ng and Heather share thoughts for families who are facing a very preterm birth:
Dr. Ng: These are often difficult conversations. As health care providers, we need to outline for families the possible outcomes of having a very premature baby. These babies are at high risk of many developmental challenges, including vision and hearing problems, motor delay, impaired learning and behavioural and other developmental challenges. Sunnybrook is a leader in developing treatments for infants born at 22 and 23 weeks. However, it’s a very heartbreaking reality that not all of these babies will survive. We provide information to families that if their baby lives, they will be very fragile over their first few months of life, and may have ongoing health issues into childhood and as an adult.
Gage, born at 22 weeks and five days, in Sunnybrook’s NICU
What we try to keep in mind is that families’ concept of disability varies and depends on their family circumstances and value systems. I see the role of the health care team as experts providing information to the family, but ultimately the family has to make decisions that are right for them. There is no right or wrong decision in these situations.
Heather: “What do you want?” I remember my doctor asking that question. In my heart, I knew that I wanted to try. I wanted the team to resuscitate Gage. I knew my values and this was the right path for my family. I know many families wouldn’t have chosen the same path and I’m okay with that. You need to do what is best for you and your family.
Dr. Ng: I heard these early discussions referred to as “a meeting of two experts,” which I thought was great. The health care provider offers their expert clinical knowledge and the family are experts on their lived experience with health and illness. Bringing this all together results in ‘shared decision making.’
Heather: That’s right. For one family, one condition might mean something. For another, it might mean something totally different, even though the condition is the same. Gage ticks the ‘disabled box,’ and it hasn’t been an easy path, but we find love and joy everyday.
Dr. Ng: A centre like Sunnybrook, with a maternal fetal medicine team specializing in high-risk pregnancies and a Level 3 NICU team specializing in the care of the very preterm infants, enables us to not only provide expert treatment to these infants, but also to start educating and offering strategies to their families in caring for their special infants as early as possible. We have a team called BOOST (Building Opportunities for Optimal and Smooth Transitions) that focuses on the transition from the NICU to home by engaging in family integrated care, empowering families in providing care and to advocate for their infants. In this stage, we shift much of the decision making for the child to the parents while in the NICU. In doing so, we are starting to build their “parental capacity” muscles before babies are discharged from the hospital.
Heather: I have a photo of the first time I held Gage. He’s on my chest in the NICU. He was so tiny. A few months later, he left the hospital breathing on his own and breastfeeding. Now he’s skiing and loves anything to do with animals. He works hard to do the same things kids his age do, but he does them. It has taken work to get there, but he’s come out on the other side.
