EA/TEF Awareness Month, 2020

by JoleneJan 2, 2020Special Needs Parenting1 comment

EA/TEF Awareness Month has been my favorite way to usher in January for a decade, and 2020 is no exception. As in past years, Different Dream will feature posts from parents raising children born with some variation of the condition. This year, for the first time, at least one post will be partially written by an adult born with EA/TEF.

If you’re wondering why Different Dream devotes an entire month to raising awareness, 2 reasons come to mind right off the bat. First, our first child was born in 1982 with Type C, the most common kind of EA/TEF. So I have a vested interest in making the general public more aware of this birth anomaly. Second, the condition is quite rare, occurring once in every 3,000-5,000 newborns. 60% of babies born with EA/TEF have at least one other birth anomaly, though our son did not. That means there’s a lot of awareness raising to be done, and since January is cold and snowy where I live, it’s the perfect time to talk about EA/TEF on social media. Indoors. Where it’s warm and cozy.

To whet your appetite for what’s to come, check out this 2019 post, which is a compilation of favorite EA/TEF Awareness Month posts over the years. You’ll be blown away by the cuteness of these EA/TEF kids and by the wisdom their parents share. EA/TEF Awareness Month for 2020 will feature 2 posts every week, so stop by often for more cuteness and wisdom.

If you’re an EA/TEF survivor or are raising one, you’re also invited to share your story in the comment section below. I would love to hear your story and so would Different Dream readers around the globe!

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By Jolene

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

1 Comment

Hayley on January 8, 2020 at 12:58 pm

My baby boy was born May 16, 2019 via emergency c section. About 2 hours after birth, they wheeled him down to have more thorough suctioning as the bulb wasn’t handling the amount of amniotic fluids and he was choking on them. When they attempted to insert the suction tube, they realized that they could not reach the stomach through his esophagus. They did an X-Ray and he was diagnosed with EA/TEF. At 3 days old, he had his repair through 2 tiny incisions in his side (one under his ride armpit and one in between his right ribs). His repair was a success as the distance was very short! At 2 weeks old he had his first taste of my milk. I pumped like crazy while he was in the NICU because that was the only thing I could do for him that was within my control. After a couple days of measured feedings with the bottle, my baby was able to latch and receive milk directly from me! Since then, he has had 3 additional surgeries for dilation. He has recently started trying some purees and even practicing with “puffs”! We are SO excited with his progress and so proud of him for his strength and courage. My baby is my hero. He will be 8 months old this month and is still exclusively breastfed. He goes to daycare 4-5 days a week and is the most loving, happy, joyful baby I’ve ever had the privilege of being around. He was born at 6 pounds, and now weighs close to 20! God did not give me a baby with special needs because I am somehow “stronger” than other mothers. I am strong because I have a baby with special needs. His fight is my fight, and I will continue doing whatever it takes to make sure he is happy, healthy, and thriving.