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Welcome
to Jonathan's Story
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We
are: Diane, Janis, Eli and Jonathan
We
live in Toronto,
Ontario, Canada
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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. |
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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.
Check
NEWS for latest month
updates!
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
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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.
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We support
The
Sasha
Bella Fund
promoting
family centred and palliative care at Toronto's Sick Kids Hospital

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