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 10 good reasons:
#10: 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.
#9: 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.
#8: 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.
#7: Children with EA/TEF Are Born with Some Form of Tracheomalcia
Our doctor described tracheomalcia 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.
#6: 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.
#5: Because EA/TEF Is Rarely Prenatally Diagnose
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.
#4: Grey’s Anatomy Recently Featured EA/TEF in an Episode
Hey, we’re on an awareness roll. Let’s keep it going! Click here to view Dark Is the Night.
Click here to see the Grey’s Anatomy Dark Is the Night Case File, which does a pretty good job of explaining EA/TEF.
#3: Guest Blogger Christine Lester’s Son Billy Was Born with EA/TEF Complications
BTW, Billy has been struggling with EA/TEF complications since before Thanksgiving this year. Keep the family in your prayers!
#2: Guest Blogger Lori McGahan’s Son Brandon Is an EA/TEF Kid, Too
Lori is passionate about raising awareness concerning EA/TEF. Check out Bridging the Gap of EA/TEF the Facebook 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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