Medical Diagnosis

I love learning. I’m a curious person by nature, ask a million questions (just ask my husband how much fun it is to watch a documentary with me…) and like to research new things I don’t fully understand. So, it came as a bit of surprise to me when we got Rémi's diagnosis that I didn’t ask a single question. Not one. I didn’t even want other people to know the official name of his condition for fear they would use Dr. Google and pass along some dreadful outcome to me.

Looking back on those early days I know part of it was fear. However part of it was blind trust in our medical team. If there was something I needed to know they’d tell me, right? Having been a medical momma before, I know better. While I have full faith in our medical team, I know I need to ask the questions. Pay attention to the little things day to day and be Rémi’s number one advocate. (Read more about advocacy in the medical momma category).But for some reason in those early days my strength wavered, if only for a moment.

People asked questions, and I had no answers. All I knew was my precious boy was headed to surgery he needed to save his life. I had a million questions, but mostly just a need to get it done.

After his surgery and recovery, my curiosity got the better of me. I turned to the internet to find more information on Rémi’s condition. So here goes my best explanation …

Tracheaoesophageal fistula with a long gap esophageal atresia. TEF with LGEA as the medical professionals like to say.

What does it mean? Sometime in the very first few embryonic cell divisions (in the first 4ish weeks of pregnancy) the code for developing the esophagus went wrong. Instead of connecting to the stomach, it connected to the trachea( breathing tube). Anything that goes in the mouth (including all the saliva produced) then backs up into the trachea and then into the lungs. It also means no food by mouth, as it would never get to the stomach and would instead overflow into his trachea and lungs.

You know when you choke on water and then say “it just went down the wrong hole”? Essentially every drop of saliva, piece of mucous or food introduced would make it down Rémi’s wrong hole.

We learned there are 5 types of atresia, and Rémi has the most common type. It can be isolated, or associated with a plethora of other midline and genetic abnormalities. Heart, spine, kidney's, brain, intestines and anus can all be affected.

The fix? Surgery.

The surgery is two parts. One to separate the TEF, then attach the loose end of the esophagus to the stomach. He had the first surgery and successfully separated his trachea and esophagus. Unfortunately the length between the top of the esophagus and stomach was too big to be able to connect them. This is known as a “long gap Esophageal Atresia” (LGEA). The fix? Only time will tell.

Rémi’s esophagus needs time to grow as he grows. The hope is that in 3-4 months the gap will be sufficiently small to surgically attach his esophagus and stomach.

In the meantime, he will be fed through a surgically implanted g-tube. Currently 8 meals a day! (Feel free to follow the breastfeeding channel for more on that topic). He also has a replogle tube in his mouth that reaches the bottom pocket of the esophagus. Remember, even though there’s no connection to his trachea anymore the fluid still has no where to go. As it builds up, it can overflow into his mouth and still slip down his airway causing him to choke. The replogle tube is under constant suction and pulls out all the excess fluid that you or I just swallow and process in our stomach.

This tube blocks regularly, needs constant attention and care from the 24/7 nursing staff and often needs to be fully changed out. We are learning to maintain this on our own as the next big milestone is to leave the bed and go for a walk in the hallway soon!

There’s always a next step, something to work towards. As Rémi continues to grow and wait for his next big surgery, we will continue to make daily strides and fill his life with as much stimulation and so much love. I continue to grow alongside Rémi. My strength grows daily as I stay curious, and ask the hard questions. It’s not always easy, but seeing his face everyday makes it all worth it in the end.

Thanks for following along. Stay tuned for more Rémi updates.