Saturday, January 28, 2012

Our Experience with CHD

Our Story:

Tanner was born February 3, 2011. As far as we knew prenatally, he was perfectly healthy. After his birth he was still a perfectly healthy baby.

The day we were supposed to be discharged from the hospital and go home with our healthy baby was a day I will never forget.

Our pediatrician came to us in the hospital and told us that he could not feel his femoral pulses (in his legs), and was worried that it might mean something.

So we went to the NICU to have tests done and it confirmed that there was something horribly wrong with our baby's heart.

We were life flighted to Primary Children's Hospital in Salt Lake City, Utah where they performed more tests and found four different issues with his little heart.

1. Coarctation of the Aorta: Part of his aortic arch had a pinch in it that did not allow enough circulation. Later on, we found that it was not just a pinch but a bigger part of the aortic arch was very narrow.

2. and 3. ASD (Atrial Septal Defect) and VSD (Ventricular Septal Defect): Holes in the septum of his heart. The septum is the wall that separates the right side from the left side of the heart. He had a hole in both the upper and lower chambers of the heart which allowed blood mixture between oxygenated and non-oxygenated blood.

4. Subvalvular Stenosis (also called Sub-aortic Stenosis (SAS)): Ok, this one is hard to explain... it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap was now almost blocking the aortic valve and needed to be removed or stitched back so that valve could get circulation and grow.
We ended up being life flighted to the Children's Hospital of Los Angeles to have the surgery done at 7 days old. We were lucky that he has only needed to have one surgery and hopefully no future ones (knock on wood).

This whole terrifying ordeal lasted about 3 weeks (not to mention all the doctor appointments afterward and for the rest of his life). We got home from LA the day before he turned 3 weeks old and we finally had our newborn baby in our own house.

Tanner is now a thriving healthy boy. It almost seems like he never had a problem with his heart at all. I am so happy that he is doing so well, but there is always the elephant in the room in the back of my brain that will always be stressing and wondering if something else will happen as he grows.

Our experience with Tanner's CHD (Congenital Heart Defect/Disorder) was the most petrifying experience of our lives. Another heart mom said this one day and I just love it. She said that she never thought about heart defects or wanted to be a part of the CHD world before our child was born. But now that he is here we would not change our experience for anything.

There is a CHD board on Pinterest that has many more stories of other children and adults that have been affected by CHD. You can read their stories here.

Help spread awareness for CHD week! February 7th - 14th!

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