Welcome to Jonathan's Story
	We are: Diane, Janis, Eli and Jonathan We live in Toronto, Ontario, Canada
	Diane Flacks is an actor and writer for theatre and television. Janis works for The Office of the Provincial Advocate for Children and Youth . Big brother Eli is seven years old.
	Jonathan Purdy-Flacks was born with a giant omphalocele and associated heart defects. This website tells his story and our story as his parents and brother..

We built this site to help keep family and friends in touch and to share information with others who have (or love) children born with omphaloceles and/or congenital heart defects.

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Jonathan's Story So Far

Jonathan was born on November 14, 2006 with a giant omphalocele containing his liver, spleen, stomach, and large and small intestines. Jonathan also has an associated cyanotic heart defect called Tetralogy of Fallot (TOF). TOF has four main features: an overridding aorta, a VSD (hole), pulmonary stenosis (narrowing of the pulmonary valve), and a thickened right ventricle. In Jonathan's case he also has an ASD (a smaller hole between the atria).

Jonathan lived his first nine months in The Toronto Hospital for Sick Children (Sick Kids), first in the NICU (6 months) and then in the CCCU and on Unit 4D (the cardiac unit). Even after his initial discharge he was back regularly as an emergency and inpatient until his first birthday. To date, he has had four major surgeries... two open heart surgeries to repair his TOF, an emergency surgery to save his life after a devastating spontaneous bowel perforation at three months and an abdominal closure surgery at the age of three. Recently, he went back in for a relatively minor surgery - a repair of an inguinal hernia on the right side.

Jonny has spent months stuck on his back in a "silo", endured daily wound dressings, fought infections, overcome feeding issues, lived with intense pain, experienced bowel obstructions and survived surgical complications. After such a rough first period of life, he is now doing amazingly well. He has an enteral feeding tube (G-tube) but is making good progress with eating and swallowing. He takes speech and language classes, sees an OT for feeding and developmental support and a physiotherapist for his new muscles. He is a happy and remarkable little boy who is a wonder to us all.

Thank You

We want to say a public thank you to Dr. Annie Fecteau and Dr. Arnaud Bonnard, his general surgeons, Dr. Doug Campbell his pedeatrician, Nicole de Silva his surgical NP; Dr. Hellman and the tremendous NICU Nurse Practitioner team (esp his core group: Carol, Kim, Judy, Jennifer, Heather), his "core" nurses Kelly and Serena, Dieticians Joan and Laura, Dr. Anne Dipshan, his cardiologist, Dr. Calderone, his heart surgeon, his OT Amanda and the wonderful and skilled nurses and doctors in the CCU and unit 4D. We are also grateful for the support of his homecare nurse Julie, and his wonderful child specialist Heather. And to those friends, family and kind strangers who supported Jonathan and us during his first year and most difficult of times, thank you from the bottom of our hearts.

We support The Sasha Bella Fund

promoting family centred and palliative care at Toronto's Sick Kids Hospital