Creating Partnerships for Life: One Family’s Story of Paediatric Patient and Family-Centred Paediatric Care

Abstract

I was introduced to Family-centred Care (FCC) at Toronto’s Hospital for Sick Children in 2006. Our younger son, Jonathan (“Jonny”), lived at SickKids for the first nine months of his life and was in and out of hospital regularly for about another 2–3 years. He was born with a Giant Omphalocele (a major abdominal defect), and an associated heart defect called Tetralogy of Fallot (TOF).

There were times when it was touch and go and times we feared he wouldn’t make it. But thankfully, he’s survived and thrived and to look at him now, you’d never know his difficult history (Fig. 10.1).

I am going to share some stories from that time in our lives—about Jonny, his care, his family and how patient and family-centred care affected our experience. But first a caveat: We are one family and our experience is one experience. Others may relate, or not, to what we went through and how I describe those experiences. I understand each baby’s/family’s/patient’s experience is unique. We hope that these stories, from the perspective of lived experience, can help to illustrate the themes explored by other authors in this book.