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Heart Journeys

Jax


When I was just 12 weeks pregnant, we went for our very first ultrasound.

The tech was very chatty, telling us all about his family and excitedly showing us the on screen the picture of our unborn baby, pointing out his tiny hands and feet. All of a sudden, he went silent and appeared deep in thought. He then excused himself and left the room. When he returned, he said everything was fine and he’d see us soon. The next day, I received a call from my doctor and was sent for a more detailed ultrasound at the Foothills Hospital. There I was greeted by Dr. Fruitman, who told us that our son had a severe congenital heart defect and explained what that would mean for him. The rest of my pregnancy was filled with uncertainty and fear.

Jax was born on July 21, 2010 with Hypoplastic Left Heart Syndrome (HLHS) and criss-cross heart, a rare defect where the left and right ventricles are twisted - in this case, so much that they turned his heart around. The repair, we were told, was the common, a 3-stage surgical intervention; a Norwood at 7 days, a Glenn at 5 months and a Fontan at around 3 years.

Many children are able to go home only weeks after the Norwood, but not us. After we returned to Calgary, Jax's left lung collapsed. We learned that he had sustained nerve damage during the Norwood leaving his diaphragm half paralyzed. We went back to Edmonton to suture it so that it would no longer be in the way of this left lung. He was only in Edmonton for a week this time, but would need to stay in hospital until after his second staged surgery, the Glenn. We brought our son home on Christmas day. He was finally off oxygen, we were so happy to have him home and to this day we feel very lucky.

Jax has big problems with acid reflux, and vomits every day. Needless to say, he doesn't like to eat so we are G-tube feeding him a high calorie formula to help him grow. Getting him off the tube feeding is now our biggest challenge, but for now it’s okay. We doubt he'll take this tube to college!

~ Shannon Summers


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