Seeing myself in my patient’s eyes
by Christy Sillman
This column was originally featured on the Adult Congenital Heart Association website
“Why did you want to become a nurse?” is a question I get often, especially after people learn about my congenital heart disease. I’m not even sure how to answer that. Some days I hesitantly ask myself the same question.
It’s not like I entered nursing school with the final goal to be working in the pediatric ICU. In fact, I feared that unit the most out of all our rotations — well, that and the operating room. They both hit a little too close to home. My goal was to get my RN license and go work in a clinic or another non-hospital related nursing area. But something happened when I started working with patients in the hospital — I related to them in a special way because of my experiences, and they appreciated it.
My first night in the pediatric ICU, my patient was a baby with congenital heart disease. Eight hours into my 12-hour shift, this baby’s heart spontaneously stopped beating. We “coded” that baby for the next four hours. It was everything I feared and more. I think some people didn’t expect me to ever come back to the unit, but I did.
I came back because I realized that children with congenital heart disease do die, and it’s going to happen whether or not I’m there. If I can do one small thing, give a parent a glimmer of hope, and ease a child through a horrible procedure, then it’s all worth it and I have to find a way to cope.
It’s not easy. Especially when the child looks me in the eye and I recognize his/her fighting spirit.
Several months ago, I took care of an older child with congenital heart disease. When I walked into his room, he was crying as some other nurses were attempting to put an IV in. I rushed to his side, bent down to his level, pulled my scrub top down a little and showed him my scar. I said “I understand — I have congenital heart disease too. I’m not just your nurse for the day, I’m like you. Let’s let these nurses try one more time for that IV, and then I’ll make them stop if they don’t get it. I will hold your hand the entire time, OK?”
The light in his eyes was something I will never forget. His father burst into tears at the sight of our exchange. The little boy was calm the entire last IV attempt (which allowed them to “get” it), and he just stared in my eyes with amazement.
I guess if I had encountered a nurse with congenital heart disease when I was a patient in the pediatric ICU I would have been taken by surprise too. I shared with this child and his family my story, and although I always try to be cognizant that my conversations don’t become “all about me,” I think they wanted to hear “all about me.” The hope in their eyes took my breath away.
A couple of months later, I got word that this beautiful boy had passed away from a surgical complication. I felt a piece of me had died with him. I wondered if telling the family my story was falsely dolling out hope and wasn’t grounding them to the reality of the situation. Then I remember something my mom once said – “Hope is everything. It never hurts to have hope.” I pray that’s true, for this family and the other families I’ve cared for who look into my eyes and see a grown woman, not only living with congenital heart disease, but working as a nurse — giving a little of myself to them.
I’ve cared for other children with congenital heart disease who also died, including one child with the same defect I have. I still don’t think I’ve worked through all my emotions with that one. It’s OK to feel sad — I wouldn’t be human if I didn’t. Ultimately it makes me grateful for all that I have, and all that I’m still fighting for.
Some days it’s overwhelming. Some days I wonder how long I’ll be able to do it. For now, I thrive off of the hope I hold that these children will also grow into strong adults that continue to defy their disease. I cherish my time with them, and pray that I make their hospitalization a tiny bit better.
“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.” — Dalai Lama
The American Congenital Heart Association website.