EA/TEF Awareness Month 2023
EA/TEF Awareness Month begins each year as soon as the ball drops at Times Square. Different Dream is celebrating awareness month by featuring stories written by parents who are raising kids born with EA/TEF. Some are raising children who are still quite young. Others are parenting teens. Some, like me, have adult children who are out on their own.
Because Different Dream is a blog for parents raising kids with a variety of disabilities and special needs, not all of our readers are familiar with EA/TEF. If that’s the case for you, here’s a quick summary.
EA/TEF is short for esophageal atresia with or without tracheoesophageal fistula. No wonder it goes by its initials, right? EA/TEF is a congenital anomaly in which the esophagus is not a completely open tube. It has a number of several different types which are described and illustrated at this EA/TEF link. The condition is fatal unless newborns receive immediate treatment which requires surgery and a NICU stay. Each child’s recovery is unique, as this month’s guest blog posts will show.
Different Dream devotes all of January to raising awareness for a very simple reason. My son, born in 1982, was an adult before I met another EA/TEF parent. We lived in a very remote area of the United States for the first three years of his life, which is a partial explanation for our isolation. We moved to Iowa in 1985, but it took 2 decades and a connection with someone at our church for me to meet that first EA/TEF parent face to face. It still happens so rarely that reading the paragraph below (from an advertisement for a local pediatric clinic) got me really excited.
My hope is that when new EA/TEF parents search the internet, they’ll find this website and be encouraged by the stories shared here. I also hope that whether or not your child lives with EA/TEF, these stories will encourage you, too.
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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
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Guest blogger Karena Skibinski explains how having a child born with EA/TEF changed her life for the better.
Guest blogger Valeria Conshafter tells her EA/TEF story and explains how God took her through the darkest times.
Jolene explains how raising a child with special needs is like writing a book, with its surprising, unexpected twists.