How could I forget the one day dedicated to raising awareness for the condition that is very close to our hearts? Sorry Henry! Omphalocele Awareness Day was actually January 31, but a few days ago, Henry was walking around without his shirt on and he looked down at his stomach and said, "I have a beautiful belly". That's what reminded me of his special day.
Here he is showing off his muscles...and his beautiful belly.
About 1 in every 6,000 babies is born with an omphalocele. Of those babies, sadly, 25% do not survive. An additional 50% have severe defects with their heart or other organs.
I remember sitting in the room with the doctor after our ultrasound, hearing the worst possible diagnosis. He believed our baby wouldn't live. There were just too many defects, likely a chromosome abnormality.
And that's why I love it when people ask me how Henry is doing today. I love to say that he's doing great! We're so grateful for the love and laughter he brings into our lives every day. I can't imagine our family without him.
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