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You are invited to add your child’s name in our wall of remembrance for those babies who’ve been taken from us too soon.

In remembrance of the older children that have been taken too soon, we invite you to share your child with us here.

A few days after my daughter died of an undetected congenital heart and birth defect, someone who had held her and spent some time around her told me, “I knew something wasn’t right with her. I knew something was wrong.”

The phrase has stuck with me.

My daughter was perfect.

I don’t like the word defect much. All of these children born with what we call “defects” are just perfect; they aren’t defective. She had a beautiful heart even though it had a deadly congenital defect in it that lead to her loss.They are the imperfectly stitched handbag sold at a discount. They are much more than their sickness or defect.

I used to think that birth defects only happened to babies of moms that were sick or did something, like smoke crack while pregnant, or to a family with a genetic history of congenital heart birth defects. Smoking crack was never my thing, and my family has no history of birth defects -especially congenital heart defects – so losing a baby to a heart defect wasn’t even on my radar. None of the babies in my family were in the NICU or really sick, and definitely none of these babies had ever died.

My daughter’s heart problems weren’t my fault. She might have been a sick baby, but it was something that happened at random.

Her heart didn’t work properly, but she was not defective.

congenital heart loss