6 EA TEF Warnings Hidden from New Parents

by Jan 18, 2017Advocacy, Special Needs Parenting10 comments

Nanette Lerner shares 6 EA TEF warnings usually hidden from new parents as part of EA TEF Awarness Month.

EA TEF Awareness Month is all about educating the masses about a rare and life-threatening birth anomaly. Today guest blogger and mom, Nanette Lerner educates new parents regarding 6 EA TEF warnings hidden by the well-meaning medical community.

6 EA TEF Warnings Hidden from New Parents

No one ever expects to have an EA TEF kid. The truth is, until you have one, you’ve probably never heard of the condition, ever.

What does EA TEF mean? It means that your baby is born unable to swallow due to a somewhat rare birth defect where the esophagus is attached to the trachea instead of the stomach. But what does it really mean? Until you’ve had a kid with it, you have no way of knowing.

Nearly 6 years ago on a frigidly cold January morning, our feisty, teeny TEF boy entered the world. He was 6 weeks early and at just 3 pounds, 13 ounces, the smallest baby our surgeon had ever performed a TEF repair on. Luckily, we didn’t know this fact until after the surgery was completed successfully. After that, we had 2 long, stressful months in the neonatal intensive care unit (NICU). And then a return to the NICU about 2 weeks later for his first dilation.

Almost 6 years and several hospital stays later, we’ve learned a lot. Some of it through trial and error. Some of it through the amazing TEF/EA community. I’m grateful to say entire days go by without thinking about the fact that our boy has TEF and all the complications that go along with it. But then he lets out a cough—that deep, echoing, barky cough—and the panic sets in again.

When he was born, we thought once his fistula was repaired, that would be it. All fixed! But as all TEF parents know, that is simply not the case. Here are 6 EA TEF warnings a few things nobody told us about:

EA TEF Warning #1: Oh, that cough.

That TEF cough. It doesn’t sound like anything else and it doesn’t necessarily mean your kid is sick. He could just be clearing food out of his throat. Or water went down too quickly. Or it could be he had a cold three weeks ago, and it still sounds like he’s got whooping cough.  In any case, the cough will earn lots of disapproving looks from parents who assume you are a terrible person for bringing your germy kid out in public. Expect to hear from worried teachers and alarmed school nurses. Try to ignore the glares and the judgements. Instead, remember that all those people don’t understand TEF. Most of them probably don’t even know what it is. Which brings me to my next point.

EA TEF Warning #2: Whether you like it or not, you are now an official TEF/EA educator.

No one’s heard of what your kid’s got? Okay, fine. That means it is your job to educate the world. When you get those dirty looks from a parent, explain exactly what your kid has.  Send the teachers/school nurses website links so they can understand what they are dealing with. We even printed out fliers about TEF for concerned parents at the playground. Turn an annoying moment into a teaching one.

EA TEF Warning #3: You will never look at food in quite the same way.

Once your kid starts eating real food, you will constantly evaluate it in choking hazard terms. Some foods are obvious (popcorn, grapes) while others seem innocent but aren’t. Watermelon was always a surprising culprit for our son; it was just soft enough that he probably didn’t chew it enough. Pizza with a bready, soft crust also proved to be a problem.

EA TEF Warning #4: Fall is the cruelest season.

Sad but true. Fall has the prettiest colors, the best holidays, and great apples. Unfortunately, it also comes with back-to-school germs that inevitably morph into a back-to-school cough. Of course, fall isn’t the only season your kid is susceptible to germs—ours wound up with a horrible flu that landed him in the hospital in June. June?! Who the heck gets sick in June?  TEF kids do.

EA TEF Warning #5: The scars you can’t see are worse than the ones you can see.

Yes, our boy has a serious scar from the surgery. It isn’t small and it sure isn’t cute. But that scar is what saved his life and it’s proof that he lived through it. However, he has emotional scars from being rushed to the emergency rooms so many times.  The fear when he has when he comes into contact with any medical professional. Having to pry him out from under a metal folding chair to get him his flu shot. Those scars suck, and they aren’t going away anytime soon.

As a parent, you will have emotional scars, too. I still can’t stand the smell of the soap in any doctor’s office since it reminds me of constantly washing my hands in the NICU.

EA TEF Warning #6: It gets better. Your kids get bigger.

They learn to handle the stuck food in their throat. They can communicate when they need help. One day, your kid will bite into a hamburger and you won’t get a panicked feeling as you watch him do it. Swear.

On the harder days, which luckily become less frequent, we remind ourselves that there are far worse things than EA TEF. Just remember this: your TEF kid is a work in progress.  Just like the rest of us.

What EA TEF Warnings Do You Have for New Parents?

What EA TEF Warnings would you add to Nanette’s list? Leave them in the comment box.


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By Nanette Lerner

Nanette Lerner writes commercials, very long texts, occasional blog posts and young adult fiction. She lives in New Jersey with her husband and two children.


  1. Amber

    This is SPOT on, especially that cough! I was mom shamed in a local Culver’s over it and as a new Mom it shot my little self esteem into the toilet! But he’s three now with a little brother and we are a work in progress!

  2. Jolene

    Michele, your son sounds like an amazing person. And he is blessed to have you in his EA/TEF corner!

  3. Jolene

    Ellen, thank you for your realistic encouragement. My son is 36 and doing well with his EA/TEF repair. As you say, he has to practice good self-care and pay attention to his body fo things to function well.

  4. Michele

    Ellen Coleman is exactly right on. As a mom to a 34 year old ea/tef son, I am still a big part of his life because I have and always will be his number one advacate who is still fighting to finding ways to improve his health and quality of life. There will be ups and downs to this condition throughout their lives. My son still continues to amaze me because there are times I am so exhausted in fighting for answers for the pain and nausea that he is battling currently from his un-cured condition that I am ready to quit, he continues to fight this battle with a chronic birth condition and is not giving up. So we are each other’s warriors……

  5. Ellen Coleman

    As a 48 oops 49 now year old patient ….. yes that’s right I’m Still a patient, I want to add that this does not go away ever! Your swallowing and there fore digestion and possibly lungs will be different for life. But with attention and good self care and management you will be able to achieve anything you put your mind, heart, soul and body into. Just think about how your going to fuel the body and do it! I and other’s like me in our 30’s 40’s and 50’s want parents to know that their precious bundles of miracles can lead amazing lives just like the other kids but be aware, always aware and take care of the gift you have been given in your repaired, but not cured esophagus or as we say in New Zealand Oesophagus.

  6. Jolene

    Hi Stephanie,

    Those are excellent warnings. Thanks so much for the reminder that, though things are scary, the EA/TEF community offers a wealth of information that many doctors don’t know. It’s also a support system for parents facing an unfamiliar new reality in their lives.


  7. Stephanie B.

    Warning: Almost all EA/TEF kids have a degree of Tracheomalacia and the doctors won’t warn you that they might turn blue and stop breathing. Despite dismotility and reflux meds, our 3 year old has never needed a dilation, but almost got a trach. Thanks to the experience of the EA/TEF community, we got him on the right medicine regime and avoided the trach. Another warning? As a EA/TEF parent your PTSD is real, but you are never alone!

  8. Jolene


  9. Jamie

    My son went home with a trach and at 5 months had a g-tube put in. I am VERY familiar with all of these! You really can’t ever look at food the same way again.

  10. Sharon Lerner

    This poignant story brought me to tears with memories of the difficult early weeks of his life.
    It is a pleasure to see him eating , running and playing . His energy and outgoing personality are an inspiration to others.

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