February 2020

"Sawyer is a lively, happy one-year old boy that loves nothing more than to snuggle and laugh. Sawyer's diagnosis came quite early. Sawyer and his twin sister Sadie were born 2 months premature in January 2019. Sawyer immediately began showing signs of respiratory distress and was placed on a ventilator after being resuscitated. Within a few hours his right lung collapsed. During the x-ray for the pneumothorax the pediatricians in the NICU noted a "strange ballooning in his esophagus". A nurse practitioner, whom we became quite close to, joked that "he just needed to burp!". Within 24 hours Sawyer's left lung also collapsed which required additional x-rays. The ballooning in his esophagus remained. Over the following weeks there were additional x-rays performed, CT scans, swallow studies, and endoscopies. After weeks of leaving everyone scratching their heads, we finally received a diagnosis of Achalasia of Cardia or Esophageal Achalasia. Though it is extremely rare in children, approximately 1 in 500,000-1,000,000, it is nearly unheard of in newborns. Essentially, the lower sphincter in his esophagus does not function causing food to build up and not release into his stomach. This contributes to the ballooning seen on his scans. With very little literature available our local gastroenterologist took on the challenge and has followed Sawyer since. He had a feeding tube placed prior to leaving the NICU which remains in place today. He is currently in feeding therapy and is making wonderful progress towards being able to eat solids. Though we know surgery to correct the Achalasia is inevitable, we are not sure exactly when that will be. For right now we are thanking God for our sweet boy and letting him take the lead in showing us all he can do!"


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