My name is Christy Cook. I was born an EA/TEF baby in Baltimore, Maryland in 1963. Fifty four plus years ago 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 so the gastrostomy tube was very carefully inserted into my small stomach. Thus, the g-tube became my life line the next four years. The doctor’s goal was to attempt another corrective surgery when I weighed 25 pounds. Reaching 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 the veins available to be used to inject 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, at times fluids were simply injected under the skin to help sustain my life. When I was around two 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. The transplant scarred and “died” in my chest.
For the next few years, my life consisted of gastrostomy feedings and hospital visits. When I was around three years of age, my family decided to move back to North Carolina, our 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 (subcutaneous)… Thinking 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 has served me well… So, I chose not to risk having it placed into my chest since everything was working!! If I should get a “sticky”, I simply help the peristalsis motion by massaging my esophagus! Voila!! no more “sticky”!
This triumphant procedure has served me well for more than 50 years. My corrective surgeries have been written up in medical journals and lots of medical students at Memorial Hospital have studied and learned from my medical history. I have been able to enjoy eating by mouth since I was four years old. I have no other serious birth abnormalities. 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 for Christy's Courage is to use my life experience to make a difference for EA patients by supporting them on their journey to navigate this diagnonsis and live a successful life.