Christy’s Courage is a the brainchild of Christy Cook, an EA/TEF survivor. As part of EA/TEF Awareness Month, 2020 she is sharing her fascinating story and her vision for supporting EA/TEF kids and their families.

My name is Christy Cook. I was born an EA/TEF baby in Baltimore, Maryland in 1963 and my “long gap type C” journey began. The first surgery at attempting to correct my unusual birth defect was performed on the very first day of my life at Sinai Hospital by Dr. Jack Handlesman and his team of doctors. Since the gap at the esophagus was too long, the connection was not successful. Therefore, a gastrostomy tube (g-tube) was very carefully inserted into my small stomach. This g-tube became my life line the next 4 years. The doctor’s goal was to attempt another corrective surgery when I weighed 25 pounds.

When I reached this goal weight sometime during the year of my second birthday, the doctors began contemplating another method for corrective surgery. During this time, I was in and out of Sinai Hospital numerous times for various medical issues relating to EA/TEF. At one time, all my available veins for injecting fluids were depleted. The doctor told my parents that only a miracle could save my life.

A miracle did happen!

The doctor performed an extraordinary surgery to find a deep vein in my groin through which I could receive lifesaving fluids. Also, there were times when fluids were simply injected under the skin to help sustain my life. When I was around 2 years of age, Dr. Handelsman performed a colonic interposition in my chest cavity to try to make a connection to my stomach. Unfortunately the transplant did not succeed because it scarred and died in my chest.

For the next few years, my life consisted of gastrostomy feedings and hospital visits. When I was around 3, my family decided to move back to North Carolina, their home state. After having my medical records sent to the Chapel Hill Hospital at the University of North Carolina, we made contact with a renowned surgeon Dr. Colin Thomas. Dr. Thomas decided to transplant a second colon section outside the chest cavity just under the skin or subcutaneously. His thinking was that this colon transplant could be surgically put into the chest cavity at a later date.

Eureka, a successful connection was made!

This type of corrective surgery has been an unusual restorative procedure that serves me well. Therefore I chose not to risk having the transplant placed into my chest since everything its working If I get a “sticky,” I help the peristalsis motion by massaging my esophagus.

Voilà, no more “sticky!”

This triumphant procedure has served me well for more than 50 years. I have been able to enjoy eating by mouth since I was 4, and I have no other serious birth abnormalities. My corrective surgeries have been written up in medical journals and medical students have studied and learned from my medical history. Thankfully, there are medical professionals who continue to do research and are finding better ways to treat, repair, and surgically help these precious babies who are born with this rare and unfamiliar birth defect.

My goal is to use my life experience to make a difference for EA/TEF patients by supporting them on their journey to navigate this diagnosis and live a successful life. For that reason, Christy’s Courage was established in 2012 when I started to write a book about my life. The book turned into a non-profit when I, along with Pi Kappa Alphas at Western Carolina University, raised money to gift an adjustable bed to an EA child. Since then have held many different fund raisers to raise awareness for EA and to gift adjustable beds, wedge pillows, monetary gifts, Farrell bag covers, airfare to hospitals, and anything else we can handle. We have a scholarship fund for EA young adults to help with their college needs.

Because EA is so rare, it is a challenge to get people engaged to attend our events and make monetary donations. So, if you are reading this educate someone about EA, please refer them to Christy’s Courage so we can make an impact for the EA community!

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