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 with this condition, soup–or any kind of food–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 left untreated, the diagnosis was fatal, but it 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. In fact, our son was in his twenties before I finally met another parent and child of the EA/TEF alphabet soup variety. Just two years ago, thanks to the Facebook group Bridging the Gap, I’m part of a community of moms who know what it’s like to raise a child with EA/TEF.
Alphabet Soup: Not Alone Style
Even so, my heart aches for parents of kids who have special needs–not just EA/TEF, but any sort of special needs–parents who feel isolated and alone. I close my eyes and picture them devastated after an unexpected diagnosis, sitting by their child’s hospital bed, waiting at the doctor’s office, rocking their babies in the middle of the night. I pray for them, asking God to surround them with his presence. I write books to assure parents they are not alone. I blog at DifferentDream.com, highlighting resources to help them. And now, thanks to an invitation from Mike Woods, I’m one of many guest bloggers at Not Alone who share the same passion for parents like you.
My efforts are motivated by two things: old memories of isolation and the grace God poured out upon our family during our unexpected, unwanted special needs journey. His grace was abundant, miraculous, and available to our family in 1982 when our journey began. Thanks to God’s abundant grace, we were never alone. Not even when we felt alone. Looking back, we see how day after day, year after year, God put people in our lives to encourage us and uphold us in prayer. I hope the Not Alone community will serve the same function for you and make the alphabet soup of your child’s diagnosis a little easier to swallow, a little less isolating.
Dear Father, use this website to encourage parents of kids with special needs. Use it to put people in their lives to uphold them in prayer. Use those people and the stories at this website hear to assure parents they are not alone. May the truth of your word resonate in our hearts. Amen.
God is striding ahead of you.
He’s right there with you.
He won’t let you down; he won’t leave you.
Don’t be intimidated. Don’t worry.
Deuteronomy 31:8 (The Message)