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, 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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