Alphabet Soup Is Hard to Swallow

by JoleneJan 24, 2013Advocacy, Special Needs Parenting2 comments

Alphabet soup isn't hard to swallow. But when a pediatrician says your newborn has EA/TEF, the alphabet soup diagnosis can be deadly for your baby.

EA/TEF Makes Everything Hard to Swallow

Alphabet soup isn’t hard to swallow. Not for most people anyway. But when a pediatrician says your newborn baby has esophageal atresia and tracheoesophageal fistula (EA/TEF), the diagnosis is a hard one for parents to digest. And for the baby, this particular alphabet soup can be deadly.

Alphabet Soup: EA/TEF Style

My husband and I learned of our son’s diagnosis about seven hours after he was born in 1982. From the outside our baby appeared to be perfectly formed. But the doctor explained he had what was then called a tracheoesophageal fistula (now esophageal atresia is added at the front). “We call it TEF for short,” the doctor explained. “The top of his esophagus comes down from his throat and forms a blind pouch. The bottom comes up from his stomach and hooks into his trachea.”

The doctor explained that the diagnosis was fatal but could be corrected with immediate surgery. So our ten-hour-old baby was life-flighted to a hospital 730 miles for surgery. He wasn’t even a day old when the pediatric surgeon called to report that the operation was a success, and our baby was doing well.

Alphabet Soup: Murphy’s Law Style

For three years after our son’s birth, he was a Murphy’s Law kind of kid. If any post-op complication could happen, it did. If any bad virus was going around, he got it. If a reason to throw up could be found, he found it. Our lives were a blur of doctor’s appointments, hospital tests, surgeries, sleep deprivation. The experience was isolating. The sense of isolation haunted me for years, long after the corrective surgeries ended, and our little boy became a healthy child and then a healthy teen.

To read the rest of this post, please go to the Not Alone website.

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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.

2 Comments

Jolene on January 25, 2013 at 1:36 pm

Thank you for the encouragement, Ruth!
Ruth Stieff on January 25, 2013 at 9:40 am

I remember you sharing this part of your life at the EFC district conference at our church. So glad you shared it again as most moms just beginning down this road need a mentor. Articles like this meet this need.