The thing about EA/TEF that most people don’t mention isn’t just one thing. It’s many things as today’s guest blogger Amanda Alcamo explains. What’s the one thing you would add to what she says? Share your one thing in the comment box below.

The thing about EA/TEF that most people don’t mention is the utter shock that comes over you when the surgeon breaks the news. We had no idea that there was anything wrong with our little one until the day after he was born, when I finally got to hold him for the first time, I noticed a small tube coming from his mouth. I recall not being too focused on that as much as the fact of this blessing that I was able to hold in my arms.

It wasn’t until hours later when the surgeon came into my room and explained what he was going to do. “Your son was born with what we call tracheal esophageal fistula with an esophageal atresia. Basically, his esophagus only grew the top half and then was capped off while the bottom half actually grew into this trachea.”

My response was, “Excuse me what?”

As he explained it again and drew a diagram all I could think about was How did no one notice this before he was born? and When can I take him home?

Our surgeon said there was no easy way to determine that this is something babies have prior to birth and that it’s very rare. He was also extremely confident that our baby would go home in about 2 weeks.

The next morning we all rolled down to the surgery wing of the hospital. I leaned over my sweet 2-day-old baby’s face and whispered, “Today is the day the Lord has made, I will rejoice and be glad in it.” (Psalm 118:24)

Nearly 3 hours later we were able to see our sweet boy. His surgery was successful, and we took him home just over 2 weeks later. But the fear and unknown has continued for years.

Life with an EA/TEF kiddo is different, challenging, and sometimes scary. The dozens of time we have to explain his situation to Drs or teachers can be exhausting. But something sticks in my mind every time I begin to doubt that we endure this for a purpose. Each person we explain this to may not have a personal relationship with Jesus yet. We do. And we know that the God created Isaac formed our son in my womb. He gave our baby life so that we have opportunities to share about God’s perfect love, His grace, and His strength when we are weary.

This past summer we learned of another defect with our son’s bronchial tubes. He endured another long surgery to have his left upper lobe removed. Even then, exhausted, tested, and weary, I found myself dozing off in the waiting room during the procedure. I reminded myself of Psalm 118:24 again.

“Today is the day the Lord has made, I will rejoice and be glad in it.” 

It is, and He did.
I did, and I am.

Our son is a blessing and a warrior. I count it all as a blessing now that we get to endure this journey in life.  Through our son, we are reminded how precious it really is and how loved we really are. That’s the thing about EA/TEF people don’t mention.

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