In today’s EA/TEF Awareness Month post, guest blogger Mary Monahan shares the story of her EA/TEF experienced that began more than 60 years ago. Her story will bring hope to parents of younger survivors. It will also make parents and survivors alike grateful for the advances in treatment over the years.

My first EA/TEF memories are of being tied to my bed and being offered a graham cracker when I cried for my mother. In the 1950s, it was thought that staying on my back was best. Also, parents were not encouraged to stay with their children in the hospital in those days, so my early years were spent very isolated from my family.

I was born before albuterol and portable breathing machines, before VACTERL was even identified as a syndrome. I had my surgery when it was thought that surgery would cure me. All of the extra illnesses and swallowing problems, not to mention GERD, were believed to be of my own making. My adult medical care has been hit or miss due to my constant moves. I grew up long before social media and the internet connected me to the wider world of EA/TEF survivors. Now that I see what others are going through, I am still astounded at my luck!

To compound the issue, our family life was always chaotic. Any one thing could topple the tower. Our extended family lived out of range, and I was the second of seven children. Both my parents worked to support their large family. Because there were so many children to care for, my special health needs didn’t mean I was always specially cared for. I know what it feels like to be a mom to a child who seems to be ill all the time–I’ve lived both sides of the dynamic.

I am writing this to reassure parents who are struggling to care for their sick children, and for those who feel guilty. I recently turned 61. I am alive and have lived well in spite of having been born with EA/TEF. The combination of a bit of neglect and craziness in my early childhood has served me very well in the end. I’ve climbed mountains, rafted for days on a western river, ridden a tandem bike over five of the Fourteeners  (mountain passes over 14,000 feet hight) in Colorado. I left my marriage after twenty years and went back to graduate school. I still get really ill from viruses, and become a hermit during flu season, but I’ve adjusted to what my body demands of me. I am who I am because of how I started, and I am pretty pleased with myself, finally.

My first EA/TEF memories come from the dark ages of the condition’s treatment.  I am still here and have lived quite a normal, adventurous life. Like me, most of the EA/TEF children born today will go on to live very normal lives. Parents, find comfort and hope in that!

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