The Cheneys didn't expect their baby's life to be an esophageal atresia story. For EA/TEF Awareness Month, Jen tells the tale of their sons first 8 months.

An esophageal atresia story was not when Jen Cheney and her husband Will expected when they learned they would soon be a family of 3. For EA/TEF Awareness Month, 2019 Jen shares about what life has been like for them since the birth of Jack in May of 2018. Hang on for the ride and be prepared to fall in love with their pint-sized son!

I learned of Jack’s diagnosis when I was 32 weeks pregnant. I had severe polyhydramnios and was sent to maternal fetal medicine for an ultrasound. The doctor came in and said there was no stomach detected in the ultrasound which meant my baby most likely had an esophageal atresia–a rare condition where the esophagus does not fully develop and is not connected to the stomach. I had never heard the term and could barely pronounce for several days. Through tears I asked the doctor what had caused it.

He said, “If you have hundreds of thousands of cars being made daily on an assembly line, eventually one of them is going to be defective.”

I couldn’t get the word defective out of my head for weeks. I felt defeated and that it was all my fault. I was already a bad mom and my son wasn’t even born yet.

Jack was born on May 17, 2018, the happiest and most terrifying day of my life. What started out as a routine non-stress test at 36 weeks ended with an emergency C-section. My 4 pound 12 ounce baby boy was fighting for his life. Before he was taken up to the NICU, I got a quick glimpse of him as the doctors sewed me back together. 6 hours later I finally held Jack. A nurse carefully placed him on my lap. I had to be extremely careful not pull on his IVs and replogle–a tube down the throat to suction out secretions since he could not swallow. I couldn’t hug him or hold him close to my chest. I couldn’t feed him. He screamed the entire time. I feared that he didn’t know I was his mom and that was devastating.

Jack had a g-tube placed at 2 days old and finally got real food. The goals written on his wall during his 88 days in the UC Memorial NICU in Colorado Springs were to “rest and grow.” His team did a great job of preparing Jack for surgery. There were a few bumps along the way, but Jack did well. My husband and I spent every day by his side, and the doctors, nurses, and NICU staff felt like a second family. Soon, we felt as though we had moved into our hospital room.

When Jack was big enough for surgery, we transferred his care to Boston Children’s Hospital where they have an entire team dedicated to esophageal atresia patients. His first surgery, the Foker Method, took place on August 16. 11 days and some scary moments of respiratory distress later, Jack’s esophagus had grown enough to be connected! The next several days in recovery were the hardest as my 3-month-old baby went through morphine withdrawal. He was sweating, shaking, irritable, and inconsolable. I would have given anything to switch places with him.

Once Jack had recovered from withdrawal and was healing well, he ate by mouth for the first time ever at 3 and a half months. When he sucked down 10 ml of formula for the first time. I knew Jack was going to be okay and had made it over the biggest hurdles.

After 136 days, 2 hospitals, 1 cross country air ambulance ride, 7 surgeries, and countless pokes, tests, and procedures, Jack came home! He is now 8 months old, has had 1 additional surgery to widen his esophagus, and takes most of his feeds by mouth. Although we have a long road ahead with several more surgeries and challenges, I feel hopeful for the future. I will worry for Jack for the rest of my life, but he is a fighter and will overcome any obstacles.

The best advice I can give families going through this is to celebrate the small victories. Don’t give up hope because our babies are stronger than we will ever know.

Jen Cheney is a wife and stay at home mom to her son, Jack. Jen previously worked as a teacher’s aid in an elementary classroom for students with special needs. Jen, Jack, and her husband, Will, live in Colorado Springs, CO where they enjoy hiking, skiing, and spending time as a family. Jen is inspired by Jack’s strength and hopes to spread awareness of EA/TEF by telling Jack’s story and giving families in similar situations hope.

 

 

 

 

 

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