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 on born November 14th 2006 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 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. All his abdominal organs were outside his body in a fragile umbilicular sac. 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. His lungs and chest cavity are long and narrow.

Jonathan lived his first nine months in The Toronto Hospital for Sick Children (Sick Kids), first in the NICU (5.5 months) and then in the CICU and on Unit 4D (the cardiac unit). We have also spent short times on units 7C and 5B. He has had three major surgeries to date. He had two open heart surgeries to repair his TOF and, at three months of age, he had an emergency surgery that, thanks to the quick action of the NICU staff and his general surgeons, saved 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 complications from his heart surgeries (including chylothorax, collapsed lungs and chest infections). Jonathan was released from hospital on August 11th, 2007 just days short of his nine month birthday. he has had short stays since that time but mostly he's been at home and doing well. He has an enteral feeding tube (G-tube) and still does not fully swallow. He is scheduled for his "closure" surgery sometime in the fall of '08. He is a happy sweet boy who is a wonder to us and to everyone who meets him. We are grateful everyday that he his here with us, alive and well, safe and at home.

Thank You

It takes a village to raise a boy like Jonathan. 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 past and current OTs 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 Kelly. 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