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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

Jfriess89 Jfriess89 18-21, F 3 Responses Nov 6, 2009

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Hi I too have lived with this my whole life. After numerous misdiagnosis despite reporting throwing up and choking on food, I am learning about this condition that I've had my entire life. At two hours old I had surgery to connect my esophagus and stomach. After many years, I ate my first solid pea around five and preceded to choke. Many of those episodes replayed and although I grew I never realized other people didn't choke and throw up all the time. After several rounds of antibiotics one year for pneumonia ( I was in my 40's)I finally demanded some tests be ran to figure out why I could not get rid of it. The verdict( my doctor was wonderful and understood my frustration) was that my esophagus had several strictures from my birth defect that had caused food to back up into my lungs. We have had several dilations of my esophagus each year and our now considering surgery. I am unsure if that is a better option. I have been reading stories from others and trying to figure out if the quality of life will improve. Sometimes, I change my diet to liquids just so my chest won't hurt as bad from food. I restrict what I eat to prevent the possibility of choking. I keep hoping for a better alternative. Any insight is so helpful as I really don't know anyone with a similar medical condition. I still throw up in the night and regurgitate food often. I agree with you that while the truth may not be what you want to hear, it sure beats not knowing. If you know what is abnormal then it's easier to know when you need to see a doctor and what avenues can help. Thank you so much for sharing your story.

Hello I am John and I have a close friend who underwent esphogectomy in Feb. He is still having many issues with coughing and the coughing brings on nausea and vomiting. He sleeps at an incline. I have suggested a bed whereby the head can move up and down, such as a hospital bed. He is seeminly resistant to this idea. He sez he sleeps on couch with a wedge, but it seems like an adjustable bed may be one step to make his life a little easier. Obviously he lost his cardiac sphincter during the surgery and you would be quite knowledgable with all the issues that goes with this problem so I would like to ask you what would you say to someone in his situation that could be of help to him? I have offered to do what I can to help him get back to some normality but I see this issue as dominating his every move not only physically but also mentally. I can empathize with his anxiety and undersatand his frustration. I would imagine you might have a lot of great ideas to help someone in this situation, since you have lived your whole life with this issue. I am looking for any tips that could help my life long friend to be a little more like he was before this surgery. I truly believe that anything physically that can help him will also help him emotionally.......Thanx and I look forward to hearing back from you. John

John,
First of all amazing of you to help a close friend and do some homework on this whole thing.
I had a special bed for many years... I do agree that it can help normalize things to some degree. In my case that bed, a wedge, or far too many pillows couldn't always stop a bad episode at night (food/stomach acid coming up). Your friend may be resistant to ideas at first if this is all new to him.
Some things I have learnt:
- Try to stop eating after about 7pm (earlier dinners will allow some digestion as well as a chance for his stomach to calm down)
- Don't skip having dinner all together though (sometimes my stomach is much worse if I haven't followed a normal routine)
- Maalox or Gaviscon liquid can be your best friend on nights where stomach acid may come up (you will need some direct relief on your throat)
- Soda Crackers are something I will sit up and have a few of on a bad night also
- I get fevers the next morning following a bad night, it is my bodies way of dealing I guess. So its normal not too feel good the next day, so just be prepared to take care of yourself.
- Sometimes its hard to talk about this stuff, but of all things I find that it can be really helpful to confide in someone if you have had a bad night
- your body will get better at this. It will find a way in time to wake you up before a really bad night. It will send you warning signals and all of that, so give it some time and stay strong.

All the best

Thanks for writing John

Hi. Thank you for sharing. <br />
<br />
I am a mom with a five month old baby still in the NICU. We are waiting patiently for her esophagus to be connected so that we can go home and start to live our life. I do not know what to expect when we go home and what problems she may have. <br />
<br />
I am curious... how was your esophagus connected. Did you have a transposition? <br />
<br />
Thank you so much for sharing.

Hello NinkaDinka,

I am sorry it took a long while for my response. I am only catching up just now with things like this. How is your baby doing? What has your life been like so far in terms of everything.

My esophagus wasn't simply connected, I did not have one at all (only a very small blind pouch). Pretty rare version of esophageal atresia.
I was tube fed for 2 years. My esophagus was made out of my own bowel tissue when I was old enough, big enough, and strong enough for the procedure.

If you have any questions at all about anything you encounter along your journey, I can do my best to share my own experiences.

Thanks

-Jfriess89