There seems to be a lack of research for Adults born with these conditions, does this mean a time bomb, is waiting to go off at some point, in a lot of countries you hit Adulthood at around 16 for Hospitals to move you onto adult wards, will you as Parents then start to ask, or by then will it of been to late.

Research means: The systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions.

Remember this Site is run by People who live this day in day out, if WE are worried I guess you as Parents should be to.

Christy Cook,

who run’s the Charity this website supports

xxxMy 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 the 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 y 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.  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”!

Eureka! a successful connection was made!

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. 

~

Lene Cecilie and i am 40 years old from Norway

No one Understands

Hello my name is Lene Cecilie and i am 40 years old.  I was born with a fistula between the esophagus and right lung. When I was born everything seemed to be normal and I was a happy and satisfied girl. But when my mother should breastfeed me, I began to cry. She did not understand why this happened, a child does not cry when it gets food. She tried everything when it come to feeding me. 

 Mom went to different doctors and no one understood what was wrong. After seven months she came to a doctor who took her seriously and who discovered this congenital defect. I had fistula between the esophagus and lung. I also have malformations of trachea. 
As 9 months I was operated.  The congenital defect was so little known that even doctors had never seen this, nor operated this before. They told her that i could be a sports athlete.

But how could they say that when they did know that little about this at that time. They still don’t know how this effects me now 39 years after.  In the years after surgery, there were many trips to the hospital with numerous infections and complications. As the years went, I’ve learned to live with this. I have 34% lung capacity and is still struggling with a lot of infections, wheezing and short of breath. As little I was often teased because I had so much mucus that I gurgling and breathing heavily.

 They always got the answer that “I’m glad I breathe at all.”
As an adult, I have often been with lung doctors because of my lung problems. I have, as I said 34% lung capacity and every time I’m at the doctor they say that I have asthma. Every time I ask if it is correct because I have always felt that it is not correct.
For two years since I became hospitalised because of breathlessness.

I could not speak and could not do anything. So when I was admitted in three weeks did  they take all possible tests without finding any answers. Since that day I have not been able to work and I’ve been to different doctors and hospitals without getting some good answers. No one believes that this has something to do with what i was born with. It seems to me that we who were born with a birth defect has been forgotten.

 After i was operated is my disease symptoms often not visible to most people. I have what I call invisible symptoms such as shortness of breath, headache, tired and dizzy. This allows others to not always understand how sick I am. It is not easy for others to understand what it is to have only 34% lung capacity. When not doctors know and can tell me how it affects the body, it is not easy for the others.
I hope with this to focus on us who now are adults and what it does to us. Yes to more research in this area.

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