Erin Fobert

My CHEO Story

My CHEO journey begin with the birth of my only child, Nolan, in 2007. He was born with a congenital heart defect, technically described as tetralogy of fallot, with complete AVSD, pulmonary stenosis, and a double outlet right ventricle. In plain speak, Nolan was born missing one of the walls in his heart and the arteries from the heart to the lungs were extremely small. Upon his first breath, we knew that something was wrong and Nolan was directly emergency transported to the NICU at CHEO. The first 40 days of his life were spent at CHEO, and included two open heart surgeries necessary to save his life (he would have 3 more open heart surgeries and multiple cardiac catheterizations before his ASVD was repaired in 2011).

During his first days it became apparent that Nolan had many medical issues and we were introduced to multiple clinicians who would continue to follow us on our journey. With the help of CHEO we began to understand the unique and often challenging world of parenting a medically complex child. In 2016 advances in genetic research helped us find a diagnosis for Nolan’s medical complexities. His genetic variant was located and he was diagnosed as having Au-Kline syndrome. At the time of diagnoses he was only the 7th person world wide to have this genetic variant. Although the diagnoses does not change our day to day life, it has allowed us to stop searching for the “why” to explain Nolan’s differences.

Why I'm involved

I am pleased to be given the opportunity to give back to CHEO-RI through my role as a Family Research Leader.

My Role

  • Presented her family Story to Nursing Students – November 2019
  • Research Project Reviewer: Can We Improve Quality of Care in Diabetes Clinic through Patient-Entered Electronic Health Data?
  • Research Project Reviewer: A Study to Determine Families’ Experience of the Informed Consent Discussion for Pediatric Patients Approached to Participate in Interventional Trials at Canadian Pediatric Centers
  • Research Project Reviewer: Can We Improve Quality of Care in Diabetes Clinic through Patient-Entered Electronic Health Data?
  • Research Project Reviewer: A Study to Determine Families’ Experience of the Informed Consent Discussion for Pediatric Patients Approached to Participate in Interventional Trials at Canadian Pediatric Centers