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 Stephen Lewis Foundation. Big brother Eli is six 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 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). He was born with a curved spine and had very little room in his abdomen.

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 CICU 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 three major surgeries... two open heart surgeries to repair his TOF and, at three months of age, he had an emergency surgery to save his life after a devastating spontaneous jujunal perforation. 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 major surgical complications. After such a rough first period of life, he is now at home and doing amazingly well. He has an enteral feeding tube (G-tube) and still struggles with swallowing. He takes intense speech and language classes and sees and OT regularly for feeding and developmental support. He is scheduled for his abdominal "closure" surgery sometime in the fall. He is a happy, sweet boy who is a wonder to us and to everyone who meets him.

Thank You

We want to say a public thank you to Dr. Annie Fecteau and Dr. Arnaud Bonnard, his general surgeons, as well as Nicole de Silva his surgical NP; the tremendous NICU nurses and extra special NP 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 in the CCU and nurses and NP's in unit 4D. Now that he is home we are grateful for the support of his homecare nurse Julie, and his wonderful care workers Heather and Kohava. 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 couldn't have made it through without your help.

We support The Sasha Bella Fund

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