Meet the Cardiac Kids

Colena's Story

Written by her Mother

On November 24, 1999, I had a scheduled ultrasound to see why I was so late for delivery. On that day the ultrasound technician was extremely quiet and the testing took a long time. During the ultrasound, the tech discovered I was already in labor and she urged to me go to the hospital. I told her I had to take my two boys home first and then I would go straight there. Once at home, my doctor called and told me to immediately go to the hospital because the baby did not have any heart valves. This still rings in my ears. I went straight to our local hospital and was told not to move until the ambulance arrived to transport me to a neonatal unit for delivery. Once I arrived at Woman's College Hospital I delivered a beautiful baby girl - 8 pounds 15 ounces. I got to see her for only a second before they immediately began testing. The next day we transported her to The Hospital for Sick Children and met with Dr. Jin Lee to discuss our options. The diagnosis? Hypoplastic Left Heart Syndrome or HLHS which basically means the left side of the heart is severely underdeveloped.

We were faced with three very scary choices: compassionate care (do nothing and let Colena die), a heart transplant (donor hearts are hard to come by especially for infants. The process of finding a heart for Colena could take months), or a 3 stage operation that would help the right ventricle pump only oxygenated blood to the body and prevent it from mixing with de-oxygenated blood. We chose the three phased surgical repair. Our surgeon, Dr. VanArsdell, completed the first stage (The Norwood procedure) when Colena was just five days old. Colena had a rough ride through the Norwood but was able to come home one month later. We were home only one week when she developed pneumonia that sent us back to the hospital for another month. She remained healthy until the second stage of her procedure (The Glenn) on June 5, 2000. Following her Glenn Colena showed poor heart function and that made her a poor candidate for the 3 rd stage of the operation (The Fontan). After numerous cathertizations Colena's heart function began to increase and she was able to have extra-cardiac Fontan at the age of four. Colena is an amazing little girl who loves all around her. She has three cats (one for each surgery) so we are not planning anymore right now!

Sick Kids Hospital is the most amazing place in the world. This building is full of angels who do the work that sometimes seems impossible everyday.

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Recommended Reading

Congenital Heart Defects: Decision Making for Cardiac Surgery Volume 1 Common Defects

Congenital Heart Defects: Decision Making for Cardiac Surgery Volume 2 Less Common Defects

The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them
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Congenital Heart Defects

Congenital Heart Defects are the most common birth defect. Each year, about 1 out of every 100 babies born has a heart defect.

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Congenital Heart Defects
Congenital Heart Defects are the most common birth defect. Each year, about 1 out of every 100 babies born...
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