Stories

Thank You for 30 Years!

We met Dr. Williams thirty years ago, when we arrived at Toronto's Hospital For Sick Children. Early that Monday morning, we flew from Calgary, AB with our very sick eight week-old son, Kel.  Dr. Williams’ talent and skill as a surgeon saved our tiny baby boy, born with Total Anomalous Pulmonary Venous Drainage (TAPVD).

CHD and Me: Talking With Adults With CHD

Bonjour! My name is Anne-Marie and I was born in 1979 in Ottawa. I was born with Tricuspid Atresia. I spent a lot of time in the hospital and had a couple of surgeries within my first days and a few more in the following years. Throughout my childhood, I was a seen at the Children’s Hospital of Eastern Ontario (CHEO). My major surgeries, however, were done at Sick Kids in Toronto (where I first learned to speak English, as I am French-Canadian).

Canadian Congenital Heart Alliance (CCHA) Beat Retreat Camp

The Beat Retreat is a camp for adults with congenital heart disease. It is run by the Canadian Congenital Heart Alliance (www.cchaforlife.org), a volunteer-run charitable organization that supports and advocates for patients of all ages with congenital heart disease. The camp is held on a long weekend in September at a camp in Eastern Ontario.

Full Circle: The Journey from ICU Charge Nurse to Open Heart Surgery Patient

On March 24,2010, 12 days after my 40th birthday my life changed forever...little did I know it probably would have been my destiny no matter what.

Liam's journey

On July 4th, 2011, we began our HLHS journey with Liam. Born at Mount Siani (4 hours away from home) and arrived a good 9lbs 1oz, Liam had been prediagnosed with severe hypoplastic left heart syndrome, mitral stenosis and aortic atresia while mommy was 7 months pregnant. His 20 week ultrasound, the technician could not get the left side viewing of his heart ( we found out he was a boy at that u/s), we were told to come back in a month's time. Well, 2 months later we found out before Easter weekend what God had in store for us.

Brodyn's Story

We found out we were expecting a need addition to our little family in October 2009....February we found out it was another Boy!!!! We were soo excited to have two little boys that will be 22mo. apart!!  We had a very healthy pregnancy with no complications. Brodyn Micheal Rood entered the world on June 16, 2010 he weighed 8lbs 9oz. and was a beautiful healthy boy....well we thought anyways....

Evynn's Journey with HLHS

 We are just at the beginning of this journey with HLHS.  We found out at the 20 week ultrasound that Evynn had a very complicated heart.  Her post-Norwood discharge papers describe her as having dextrocardia with mirror image atrial arrangement, hypoplastic left ventricle with mitral atresia, aortic atresia with hypoplastic ascending aorta, atrial/ventricular septal defect, left superior vena cava to leftward right atrium, and aberrant left subclavian artery.

Jakob's Story

Jakob was born on January 15th 1998. He was a good size (8.2 lbs). Shortly after being taken to the nursery, he began to have trouble breathing and his saturations dropped continually over the night and into the next morning.

He was airlifted to Sick Children's Hospital in Toronto, Ontario and was diagnosed with Hypoplastic Left Heart Syndrome HLHS.

He underwent 3 open heart surgeries (7 days - Norwood, 9 months - Glenn, 30 months - Fenestrated Fontan). He also has a double LPA stent and carries an epipen for a severe, yet "unknown" allergy.

SAMUEL (HLHS)

We are very thankful for all the research and advances in technology.  If it wasn't for this we wouldn't have had the pleasure to have a wonderful son like Samuel.  

Colin- ALVT

Our son was born on 10/31/04.  We were referred to a cardiologist after his pediatrician heard a distinct sound in his heart at his week check up.  We visited the cardiologist on 11/15/04.  After all the testings we were told to pack our bags and go to Children's Memorial Hospital in Chicago that evening.  After 3 days of testing at CMH we learned our son had Aortico to Left Ventricular Tunnel or ALVT.  A rare congenital heart defect.  Dr Backer and his wonderul team performed open heart surgery on our baby boy on 11/18/04.  He visits his ca