Nine Reasons to Mark EA TEF Awareness Month
Most people in the northern hemisphere associate January with breaking resolutions made with the best of intentions, making the best of cold and dark and snow, and spending three weeks forgetting to record the day’s date with the number of the new year instead of the old one. But some parents associate January with EA TEF Awareness Month because we’re the parents of kids born with esophageal atresia, also known as tracheoesophageal fistula. Why is it important to raise awareness of EA/TEF each January? Here are 9 good reasons:
#9: Most People Haven’t Heard of EA/TEF
It’s hard to believe this condition is relatively unknown when 1 in 4000 newborns are diagnosed with it.
#8: About One-Half of Babies Born with EA/TEF Will Have Trouble with GERD
Gastroesophageal Reflux Disease (GERD) is most often associated with adults who have chronic heartburn. But EA/TEF babies often deal with GERD (our son did and still does) because the esophageal sphincter valve into the stomach is not formed correctly or is missing. Untreated GERD can result in Barrett’s esophagus, a precancerous condition.
#7: Children with EA/TEF Tend to Vomit Often
We’d like you to know our kids don’t have the stomach flu when they throw up in the restaurant. A EA/TEF esophagus has strictures that sometimes won’t let the food go down, especially if something gets stuck. So our kids sometimes have to throw up.
#6: Children with EA/TEF Are Born with Some Form of Tracheomalacia
Our doctor described tracheomalacia as a trachea without the cartilage fully developed. Therefore, the trachea walls are floppy, and the baby’s breathing sounds wheezy and asthmatic. Our doctor said the cartilage would eventually form, and our son’s did. But his breathing was wheezy and his cough very barky until about age 5. By then, we were all pretty tired of the nasty looks and comments from strangers when they heard his croupy sounding cough.
#5: Because Treatment of EA/TEF Hasn’t Improved by Leaps and Bounds
Our son was born in 1982 when pediatric surgery was just emerging from the dark ages. In the 30 years since, treatment hasn’t changed very much, at least not when compared to treatment for kids with pediatric cancers and other, better known childhood ailments. With greater awareness comes a greater push for change.
#4: Because EA/TEF Is Rarely Prenatally Diagnosed
The prenatal clues to EA/TEF are a small stomach or no stomach bubble, high levels of amniotic fluid, and vessel cord anomalies (2 vessel cords). If a mother has any of those conditions, she could ask her doctor to move her delivery to a hospital with a high level NICU. Then the baby won’t be separated from the mother if surgery is required.
#3: Grey’s Anatomy Recently Featured EA/TEF in an Episode
Hey, we’re on an awareness roll. Let’s keep it going! Season 8 Episode 9, called Dark Is the Night, featured EA/TEF!
#2: Guest Blogger Lori McGahan’s Son Brandon Is an EA/TEF Kid
Lori is passionate about raising awareness concerning EA/TEF. Check out Bridging the Gap of EA/TEF, the Facebook page she created. It is packed with information.
#1:My Son Allen Was an EA/TEF Baby, Too
No parent can forget the moment of diagnosis, sending a precious baby off to surgery instead of taking him home. Those who have walked that road want to accompany other parents who are still on the journey. We want to help them bridge the gap between their dreams and reality.
More Reasons for EA TEF Awareness Month?
What reasons do you have for marking EA TEF Awareness Month this January? Leave a comment!
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By jphilo
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 Dig!, the fourth book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2024.
Author Jolene Philo
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My reason is my beautiful boy Evan who was born on January 18th, 2001 with EA/TEF. I celebrate his miraculous journey each and every January.
Love that you are spreading the word! 🙂
Also if your looking for other EA/TEF post you can follow this link and it will give you every one! 4 pages of them! http://f06.70c.myftpupload.com/?s=EA%2FTEF
Beautiful Jolene!!!!
thanks for sharing
Thank you for more EA/TEF Awareness!! Another important reason to raise awareness is that we lose children to EA/TEF, probably more often than people realize. I lost my 3 year old son due to TEF related complications in Aug 2011 and I think it is so important for people to understand how much EA/TEF can impact lives.
His name is Oliver! And he has many friends born with EA/TEF. We’d like to see fewer kids born with the condition and research to find out WHY it happens.
Thank you, Lori and you’re welcome Katie. Our babies (even when they grow up to be 29-year-old men) are worth the effort.
Jolene
Hooray for Evan being here to celebrate his birthday in January! How old will he be this year, Anne?
Jolene
Aimee,
I am so sorry to hear of your loss. What an important reminder of what a critical condition EA/TEF can be. Would you share your son’s name so he can live on here at DifferentDream.com?
Jolene
Hello Jen and Oliver,
Thank you for your concern about kids born with EA/TEF. For those who may be wondering, the condition isn’t limited to boys. Girls are born with it, too. For some reason, the parents who have responded thus far all have boys. Does anyone know if EA/TEF affects more boys than girls?
Jolene
My Ethan was born with Type C EA/TEF. He is 16 months old… also check out Elie Madden.
Annette,
Hooray for Ethan and his progress since birth. For those of you who would like to check out the Elie Madden website (she’s an Irish baby with a long gap EA/TEF who traveled to Boston this fall for corrective surgery), here it is: http://www.eliemadden.com/Site/Home.html
Jolene
My son was born on June 06 2012 with TEF/EA. We spent 28 days in the NICU. We were finally discharged on Juky 04. We are now experiencing problems with his reflux and had to return lat night to the hospital…it’s been a hard journey. Prayers and good thoughts for my little man 🙂
Good to hear your story, Julie. Sorry to hear your little guy is back in the hospital. I will be praying for him.
Jolene
For my 7 yr old daughter Mickenzie, born at 34 weeks with type c TEF/EA. She has been in and out of the hospital all her life but she’s a fighter and we will overcome this.
Athena,
That’s the right attitude. Go Mickenzie!
Jolene
My reason was born August 11, 2009. Katie was born with type C ea/tef. She spent her first 141 days in the NICU but is now a very happy and healthy 3 year old who brings me joy every day.
Yeah for Katie’s recovery. Thank you Denice for sharing your reason to celebrate EA/TEF Awareness Month!
Jolene
My Kenadi is the reason and she was born with both. She spent the first 4 months of her life in the NICU and the road was rocky following her discharge, but she’s now a feisty, relatively healthy 7 year old.
Hi Janine and hello, feisty Kenadi! Four months in NICU is a long time. So glad to hear that part’s over!
Jolene
I mark January as EA Awareness month to honor myself as a 51 year old EA survivor along with honoring all other EA survivors and the EA kiddos struggling to survive!
Christy,
Thank you for your comment. It means a great deal to parents of little ones struggling to survive. You are hope to them! Enjoy EA Awareness month!
Jolene