An EA/TEF Top Ten List: 30 Years Later

by JoleneJan 31, 2013Advocacy, Special Needs Parenting13 comments

EA/TEF Awareness Month 2013 ends today. 30 years ago, our baby boy, born with EA/TEF was about 8 months old, slowly gaining ground in his fight to stay alive.

EA/TEF Awareness Month 2013 ends today. Thirty years ago, our baby boy, born with EA/TEF was about eight months old, slowly gaining ground in his fight to stay alive. In yesterday’s post Christine Lester highlighted ten characteristics of parents caring for young kids with EA/TEF, and they accurately described life with our son way back when. Today, I’d like to encourage parents of young EA/TEF children by sharing my own top ten list of life as an EA/TEF parent thirty years later.

Top Ten Signs You’re the Parent of an Adult with EA/TEF

The tiny blood pressure cuff your newborn wore in NICU hangs beside his baby picture.
You can recite your baby’s surgery timeline without hesitation.
You don’t like to visit hospitals much.
When your first grandchild is born, you are surprised by grief when you realize how much bonding time you and your newborn missed.
You can’t break the habit of leaving good tips at restaurants. It’s your way of apologizing for the napkins full of vomit your child left behind way back when.
You think cribs that aren’t elevated at the head just don’t look right.
You panic when you hear your adult child has a cold, influenza, or any other common ailment.
You feel guilty because you panic when you hear your child has a cold, influenza, or any other common ailment, and chide yourself, saying, “Get a grip! He’s an adult! Get over it!”
You feel much better when your spouse says he’s panicked because your adult child has a cold, influenza, or any other common ailment.
You believe in miracles because you raised one.

What Would You Add to the List?

Until two years ago, I had never met the parent of a child born with EA/TEF. I have yet to meet the parent of an adult born with the anomaly. If you’re part of that small but growing group, please introduce yourself in the comment box. Then, tell what you’d add to the list. Thanks!

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By Jolene

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

13 Comments

Jolene on May 8, 2017 at 6:48 pm

Hi Tim, thanks for introducing yourself and your son. I’ve never heard of a parent/child EA/TEF pair before. How wonderful to hear that you are both doing well!
Tim on May 8, 2017 at 3:47 pm

Hi, I am an adult male age 61 who had TEF repair at birth, and who also has a son, now 28, born with the same defect. We are both healthy and have had few life issue beyond swallowing a piece of food that is too large and needing to wash it down.
Jolene on January 23, 2015 at 9:52 am

Hi Lila,

Hearing from adult survivors is such an encouragement to young parents. Thanks for dropping by and best wishes!

Jolene
Lila on January 20, 2015 at 4:17 am

Hi I’m an adult 43 survivor of te/tef type A treated in Pennsylvania children’s hospital early 70`s
Jolene on September 9, 2014 at 7:04 am

Hi Sarah,

To find more adults in the EA/TEF community, your best bet is to join a FB group. Here are a couple:

https://www.facebook.com/groups/157730937619916/
https://www.facebook.com/groups/49652608806/
https://www.facebook.com/groups/192029334173118/

Thanks for sharing your story! I love to hear from EA/TEF adults who are doing well!

Jolene
Sarah Fensterheim on September 8, 2014 at 11:57 pm

My parents for sure fall into all of these! I am a 20 year old type C EA/TEF survivor. I have lived a relatively normal and active life while dealing with little hiccups now and again! I would love to hear from some adults as I have only met people younger than me who were also born with this. Christine I am interested to know if they found any genetic link and Nicole I would love to hear about your pregnancy as I am always curious how that will work for me in the future.
Jolene on February 18, 2013 at 10:34 am

Hi Nicole,

How nice to meet another adult EA/TEF “baby.” How wonderful to hear about the blessings in your life. Thanks, too, for your additions to the top ten list. They are sooooo true!

Jolene
Nicole on February 17, 2013 at 2:40 pm

I am a 37 yo EA/TEF “baby” and I know my parents are #3 and #7-#10 when it comes to me!

For #4 – I’m sure there was some grief on my parents’ part but really it was much more relief that when I had my first child, she was healthy and born without any defect.

To add: #11 – your child’s wedding day is one you never thought would come (and all the emotion that comes with it)
#12 – you burned through so many rolls of film and Cube-style flashbulbs on your little Kodak taking hospital pictures you singlehandedly kept your neighborhood Fotomat in business.
katie on February 1, 2013 at 10:12 pm

The panic is the worst
Jolene on February 1, 2013 at 10:53 am

Christine,

You must have the EA/TEF family record! Do the docs say there’s a genetic link? Thanks for introducing yourself and your family.

Jolene
Jolene on February 1, 2013 at 10:52 am

Yep, Melissa, you are right. 30 years later, I still tense up when he coughs, even though he’s perfectly capable of dealing with his own health.

Jolene
Christine Bee on February 1, 2013 at 1:43 am

I don’t have two adult children yet. If my inlaws were still alive they would have been glad to meet you. My MIL died four years ago and my father-in-law died last April. My husband was born with TEF and so were my two eldest children.
Sincerely,
Christine Bee
P.S. My eldest TEF baby is thirteen and my other TEF baby turns ten this Sunday.
Melissa johnstone on January 31, 2013 at 9:11 pm

You listen to every cough. Is it a cold, stickie, tightening, flopiness or new blockage!