Why EA/TEF Awareness Month Is Grace Awareness Month

by Jan 22, 2015Advocacy, Special Needs Parenting3 comments

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January is EA/TEF Awareness Month. If you have no idea what EA/TEF is, don’t feel bad. I didn’t have a clue it existed until 11:00 AM (Mountain Time) on May 23, 1982.

I was impeccably dressed in a fetching hospital gown when a nurse wheeled me from my room to the nurses’ station to take a phone call. Back in the olden days, cell phones hadn’t been invented yet, and small hospitals like the one where our son was born didn’t run landlines into patient rooms.

I would mention that the term landline hadn’t been invented yet either, but that would detract from EA/TEF awareness, so I won’t mention it.

The pediatrician on the other end of the phone line explained that our baby, who’d been transferred to a larger regional hospital for tests, had a tracheoesophageal fistula, TE fistula for short. His esophagus, the doctor explained, came down from his throat and formed a blind pouch. It came up from his stomach and hooked into his trachea.

That was what doctors called it in the olden days. These days, they call it EA/TEF. Esophageal Atresia (EA) for the pouch at the top and tracheoesophageal fistula (TEF) for the hook into the trachea at the bottom.

Our son had surgery the day he was born. 5 years and 6 surgeries later, our boy could eat normally. But several decades passed before my husband and I met other parents of babies born with the same condition, or with one of its variations. We didn’t meet them or learn other EA/TEF variations existed until we joined Facebook.

Because the internet and Facebook weren’t invented until our son was an adult either. Boy, do I feel old.

Thanks to Facebook, I’ve become friends with young parents who know more about EA/TEF than I ever will. One mom, who’s writing a guest post for EA/TEF Awareness Month at www.DifferentDream.com, recently sent this update about the progress of her article.

The rest of this post can be found at Not Alone’s website for parents of children with special needs.

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By Jolene

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

3 Comments

  1. CL

    Hi Jolene,
    Thank you for sharing your story and I’m very glad he’s healthy. I’m an EA/TEF who was born in 1974 (48 yrs old now) and really appreciate you bringing families together for support and sharing of information. Thanks for sharing the resources!

  2. Jolene

    Thank you, Alexa. I’m glad he’s healthy too.

  3. Alexa

    Very informative. Thank you. I’m glad your son is healthy.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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