When my son was born, it was a day of mixed blessings. He seemed healthy, but it was while the nurses were suctioning out his airway that they discovered something was terribly wrong. The tube hit a dead-end. After further testing, it was determined my little guy, named Ray Junior, suffered from a birth defect called esophageal atresia with a tracheoesophageal fistula.
Esophageal atresia, commonly abbreviated as EA, means in layman's terms that Junior's esophagus wasn't fully developed; it ended in a pouch that didn't connect to his stomach. The tracheoesophageal fistula (TEF) indicated an abnormal connection between his trachea and his esophagus. It was explained to us that his esophagus actually connected to his trachea, instead of to his stomach.
We had early indicators that Junior was going to have problems. I had low amniotic fluid throughout my entire pregnancy, due to Junior's inability to cycle the fluid through his body to produce more. But due to the low amniotic fluid, we couldn't get a clear enough picture to determine what was the cause of the low fluid levels. So his diagnosis at birth of EA/TEF was shocking to us.
Junior's congenital birth defect was fairly simple to correct. One surgery at two days old was all it took to reconnect his esophagus from his trachea to his stomach. But the on-going health issues he faces are numerous: he continues to eat via a G-tube, he is immuno-suppressed, he has severe oral aversions, and he has tracheomalacia, which means his trachea is soft instead of rigid. He has swallowing issues and works with a speech therapist on a weekly basis to learn how to swallow and overcome his oral aversion. Junior is also non-verbal, because he hasn't developed the muscles he needs to form different sounds, due mainly because he hasn't been eating by mouth.
All in all though, Junior's case of EA/TEF was fairly mild and his doctors expect him to make a full recovery. He has started eating baby food by mouth, and he's learning sign language to help him communicate.
EA/TEF is a rare birth defect that affects 1 in every 4,000 children. Because of its rarity, parents with children with EA/TEF generally wear periwinkle or lavender throughout the month of January to raise awareness. This article shared our personal experience with EA/TEF, but for more information about the birth defect, please visit http://www.eatef.org/.
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