Quality of Life

I get asked a lot about our decision to follow through with the pregnancy with Evan after we found about the diagnosis of his complex heart condition and cleft lip and palate.

Even though we had a gamut of tests done from amniocentesis, to FISH probes, to fetal MRIs….the doctors all said, “We use this technology to prepare us for what we may expect…but until you actually give birth…we won’t truly know what we are up against.”

The combination of the two – heart defect and cleft – are considered mid-line defects…and the doctors were very concerned about what to expect once he actually arrived.

I even had people ask when I was carrying him…was I worried about his “quality of life.”

I tried to pray as much as I could when I was pregnant and I honestly never considered that Evan’s life would be any less fulfilling than any other child’s.  I  knew his road would be much more difficult…but I had a peace about how his life would play out.

I hope and pray people read this and watch this video as a fair warning…

Congenital heart defects – no matter how complex – do affect that child’s “quality of life.”

As you can see from the videos…his life is not ordinary at all.

I believe it’s quite…extraordinary.

(then again…I’m pretty bias 🙂 )

 

 

Comments

  1. Lori Saunders says:

    Beautiful. Amazing. Inspiring. And yes, so VERY BLESSED!!