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.

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As we approach World Prematurity Day, on Sunday November 17th, I am reminded of how far my little girls have come. This time last year, I never could have envisioned what was to come. I had just begun to feel my girls (I didn’t know that they were even girls at the time) move for the first time. I was finally starting to get that pregnancy belly when they decided to make their early debut. Reflecting back on the entire ordeal, I cannot imagine what I would have done if Sunnybrook hadn’t accepted me into their care that scary, Monday night.

How do you begin to thank an institution for giving you the greatest gift of all – the life of your babies?

For those of you unfamiliar with NICUs, they are generally comprised of a large room with anywhere from 6-8 babies. There is no privacy, and you are forced to stand on one side of your baby’s isolette, so as to uphold patient confidentiality. The NICU at Sunnybrook, however, was completely different. Babies have their own rooms, with built-in couches for parents to sleep on. You are encouraged to stay as for as long as you want. There are sliding glass doors to provide that privacy. They even have specialized rooms for twins so that both babies can be together. The physical set-up alone made it a much more intimate environment to spend those long days and nights.

Then, there was the staff. We were privileged to have met so many nurses, nurse practitioners, doctors, respiratory therapists, lactation consultants, parent coordinators, pharmacists, pharmacy technicians, social workers, environmental services professionals, and “dairy queen,” staff. Not only did they all work tirelessly to promote the health and well-being of our girls, but they supported us during the most emotionally-charged time of our lives. I cannot tell you how many times the nurses, for example, sacrificed their breaks to provide comfort to me when one of the girls was having a rough day or when everything became so overwhelming. The random ‘drop-ins’ from the respiratory therapists or pharmacists helped to normalize a sometimes unbearable situation.

Celebrating holidays in the NICU was challenging enough and the staff worked so hard to make things a little easier on the parents. There was a visit from Santa (one of the neonatologists dressed up as Santa) and a custom stocking filled with little presents for each baby, a cookie exchange that staff did for the parents, Valentine’s day surprises with hand and footprints from our nurses, celebrations of the girls’ 100 days with a personalized banner and cute stuffed animals from some of our primary nurses, and all of the little awards that the girls received along the way. I also had the honour of judging an Easter Egg decorating contest among the Respiratory Therapists. All of these little actions served to normalize this experience for us and bring a glimmer of hope to an often desolate situation.

We had the privilege of having primary nursing care, wherein when specific nurses were on shift, they were assigned to look after our girls. It was comforting to know that these nurses understood Maja and Alexis and advocated for them. I remember one of our nurses challenging an order to do bloodwork on Alexis, because she knew what was normal behaviour from Alexis and that she wasn’t, in fact, sick. There were the countless cuddles from all of the staff and this was so comforting to know that they were being held in our absence. Then there were the dreaded eye exams. One of our other primary nurses always seemed to have the privilege (NOT!) of working those days. As a parent, I could not even begin to watch one of those exams so I would wait in the hall and I would get the “all clear” when it was safe to return. My anxiety was lessened substantially when I knew that she was there with the girls.

Although we were happy to come home and leave the NICU days behind us, it was also a grieving process for me as I lost the company  and companionship that I found in all of the exceptional Sunnybrook staff. They have, and always will hold, a special place in my heart. When I look into the eyes of my girls and watch them achieve their milestones, I know that it is because of the love, dedication, and support that was given to them along the way.

Thank you just doesn’t seem like enough!

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