Danielle 

I truly believe that we are never given more then we can handle.  That we are given these lives because, we are strong enough to live them.  My experiences have made me a more compassionate and understanding person.  They’ve made me realize that things are not always as bad as they seem at first, and that sometimes life is not fair.  That it goes on even when we can’t understand why.

 

My story begins by having been born with complex congenital heart disease.  I was born with Patent Ductus Arteriosus, an Aortic Aneurysm, and Mitral Valve regurgitation.   Over the years I have had 14 surgeries and numerous procedures, with 3 of the surgeries being heart surgeries.

 

At 7 weeks I had my first heart surgery to fix the PDA, and to remove a section of my aorta and replace it with a Dacron graft, during surgery the phrenic nerve for my lungs was damaged which resulted in a collapsed lung.  To this day I still have a decreased lung capacity.

 

At a year old I was sent to the Toronto Sick Kids Hospital for my second heart surgery as there were no pediatric heart surgeons in Alberta.  The surgery was to replace my original Dacron graft with a larger version.   Complications arose and I had a lack of oxygen to my spinal cord and was paralyzed from the waist down.

 

Many years later at the age of 12, I had my 3rd heart surgery to replace the Dacron graft that I had once more outgrown.  Because of the scar tissue it was too risky to go in and replace the graft in the same spot, so the new graft was instead inserted so that it bypassed the original graft.

 

I wish this was the end of the story but unfortunately a couple years ago it was discovered that even though my Dacron graft is doing its job and functioning well another aneurysm has developed.  This will mean another surgery, as there is no cure for Congenital Heart Disease.  It is a life long illness.

 

As you can imagine, this is not the life my parents and my family had planned for me.  But with their support, years of physical therapy, many surgeries, procedures, and doctor’s appointments, I re-learnt to sit up, to crawl, and eventually to walk again.  I have been extremely fortunate that my only reminders are the scars I carry and the slight limp that I was left with.

 

A lot has been publicized over the years about young girls and body image.  This has always been very personal for me.  It was never my size, weight, or scars that made me self-conscious; that always came down to the way I walked.  A person can have all the confidence in the world, but sometimes all it takes is a glance at your reflection as you walk by a store or a look from a complete stranger to remind you that you’re different.



 

Every twist in life gives us an opportunity to experience something that we might not otherwise experience.  Because of my struggles I couldn’t keep up with other children my age, so my parents enrolled me in different activities, I took private swimming and skiing lessons, and I became heavily involved with the Paralympic Sports Association and the Children’s Heart Society.  My mother even ran the CHS teen group for many years.

 

With the CHS I experienced many things, some great and some not so great.  Like having my heart broken when I learned the true meaning of loss.  At the age of 18 my best friend lost her battle with Congenital Heart Disease.  I had just turned 16 and this experience would shape me in ways that I am only now really beginning to understand.

 

Unfortunately that would not be the last time I would lose a friend to Congenital Heart Disease.

 

Over the years, I have made some great friends that are still with us.  Many of which I met when the CHS was nice enough to send me to a Heart Camp on Catalina Island just off the coast of California.

 

I was one of three teens that was chosen to go that first year.  It was an experience that I will never forget and one that I will be grateful for for the rest of my life.

 

The CHS and my family taught me that my condition didn’t mean that I couldn’t be independent.   Attending camp that first year only helped to reinforce this belief.   I would further test my independence by giving my parents many grey hairs, as I travelled to California by myself over the next five years.  As you can imagine travelling with a health condition requires lots of planning and preparation.

 

Thanks to the CHS I participated in many activities.  I attended the ’97 Grey Cup, attended hockey games, did wall climbing, played laser-tag, and went go-carting, including many other activities that were not recommended if you have a heart condition.  Being typical teenagers we rolled our eyes and got on the rides, all while telling our chaperones not to worry so much.


Today I’m fortunate enough to be able work full time and to live independently on my own.

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Contact Us

 

 

Email: childrensheart@shaw.ca

 

Phone: 780-454-7665

Unit 128 9920 63 Ave

Edmonton Alberta

T6E 0G9

Please note our PO Box address is no longer active 

Children's Heart Society Last Updated: May 2017