to Jonathan's Story
are: Diane, Janis, Eli and Jonathan
live in Toronto,
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 eight years old.
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..
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.
NEWS for latest month
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).
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 five surgeries... two open heart surgeries to repair his
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 repair of an inguinal hernia.
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 is a happy and remarkable little boy who is a wonder to us all.
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 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
child specialists Heather and Helina.
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.
family centred and palliative care at Toronto's Sick Kids Hospital