Life With Esophageal Atresia

Hello

I would just like to start a brief description of what living with Esophageal Atresia has been like for me over the past 20 years

In my particular case.... I was born with no development at all of the esophagus or cardiac sphincter. There was a blind pouch where my Esophagus was supposed to start follow by nothing at all.... No connection what so ever into my stomach was apparent.

I was born and had to have a hole sliced into my neck so that I didn't swallow any saliva and choke on it..... my first breath may have potentially caused me to choke.

I was 2 months premature... so I was way too small to do any complex surgery for the Esophagus... so I lived on a Feeding Tube until I was two years old.

I didn't know how to eat.... I had never associated the feeling of "being full" with feeding.... I never associated the pang of hunger with the need to "eat"..... I was tube fed as I slept and would wake up a happy baby... never too hungry

After my Surgery my parents were advised not to take the feeding tube out right away due to the sole fact that I had never experienced eating to be something I needed to use my mouth for. But the occupational therapy was the first attempt to get me to "catch up" and learn to eat.

My parents tried icing sugar on their finger tips... would bring it to my lips.... Nothin....

I was probably just not quite ready to eat.... but I did learn after many attempts

The problem with having this new connection from my mouth to my stomach (and no cardiac sphincter to block the food from coming back up) was that nothing would stay down.

I spit back up whatever went in 90 percent of the time. At night my parents dealt with the HUGE issue that I wouldn't sleep flat or food would flow right back up through this new connection and potentially choke me in my sleep.

Growing up... My parents were on top of it.... baby monitor on until I was 12..... listening... waiting.... making sure I was ok....

I think I was 10 years old when we got my electric bed which I can certainly say helped for keeping me elevated to prevent these "bad nights" as we called them. Nights when my stomach had a mind of its own and would shoot back up the left over contents from my stomach.... up they came.... I would wake up covered... not a pretty picture....

I think as I aged a large role to learn was what caused the worst nights.... what to avoid. Certain foods made things worse.... Liquids of any kind before bed were going to cause problems.....

It was tough.... growing up sleep overs were next to impossible without my overnight issues kicking in.....

Now that I am 20 my bad nights are few and far apart..... I think my body was able to adapt to the fact that I was in control of things...... I was on top of it... I watch what I eat... When I eat it..... I know when I make mistakes and drink liquids too late... eat dinner too late... have to many snacks too late...... but I know! Thats the difference

I have reached a point in my life where my body will wake me up before I actually will have an "espisode" or get sick.... I will wake up.... feel it coming up.... sometimes have to suffer through the burning of stomach acid in my throat and mouth....

I am still in control now.

Its been weird... different.... I have never had anyone to compare this strange life experience with.....

I hope not to scare anyone who may have children with Esophageal Atresia and are just starting out....

As an experienced patient..... Person..... Let me know if you have any questions.

Message me if you have any similar experiences!

Cheers

-Jfriess89