Connecting The EA/TEF Community

In honor of January being EA/TEF Awareness Month, this year I have submitted a short blog post to DifferentDream.com and I thought I’d share my words here on this platform as well. I have tweaked it so that it appeals to a broader audience, but what you’re about to read is pretty close to the article that will be published later this month. If you’ve been following me from before Indie was born, you probably read her birth story and have been keeping up with our journey as parents of a child with Esophageal Atresia/Tracheoesophageal Fistula (abbreviated EA/TEF). If you’re new, you can read my birth story by clicking here. In the article I wrote for Different Dream, I focused specifically on making connections in the EA/TEF Community and how they’ve helped shape our story. You don’t have to have a child with this specific set of special needs to be able to relate to the article you’re about to read – because when it all comes down to it, every parents need to connect with other parents to feel like they aren’t alone sometimes. Whether it be sleeping through the night, or navigating tough conversations, developmental milestones, or choosing the best daycare – “it takes a village” – and in parenthood, finding that village early on will make a world of difference. So I do hope you read and connect with this on some level – and if you have questions about life with EA/TEF, my inbox is always open!

It’s that time of year again – EA/TEF Awareness Month! I will take any opportunity that I can to share about the complexities of raising our little warrior, and this blog post is such a fun take because it’s all about making friends!

After a relatively uncomplicated pregnancy, our daughter was born and immediately we knew something wasn’t right. It was a swift diagnosis and a whirlwind few days where we eagerly awaited her repair surgery and our ‘marching orders’ for moving forward. As first time parents, my husband Stephen and I were naturally terrified. I didn’t know what to expect for her future, and to a certain extent, I still feel that way sometimes. In short, Indie’s esophagus wasn’t connected to her stomach. This serious birth defect requires life-saving surgery, and happens 1 in every 4,500 live births. Despite being heavily monitored with weekly ultrasounds, this was never detected in utero and was a complete and total shock to us. In the photos below, you’ll see Indie posing with her very first X-Ray, taken at about one hour old. In the X-Ray, I’ve circled the tube they tried to pass from her mouth to her stomach, which ultimately coiled up and stopped where her esophagus ended. I’ll never forget looking at that X-Ray trying to make sense of her anatomy and how on Earth they were going to help her.

Indie stayed in the NICU for three weeks and was readmitted two weeks later due to scar tissue causing a narrowing at the repair site in her esophagus. She was actively choking and having blue spells on her bottles. Two first time parents dealing with a brand new baby is hard enough as it is. This was a low point for us, without a doubt. We were left wondering if constant trips to the hospital was our new normal… desperate to find answers and information about this rare condition that we hadn’t heard of. It was now occupying all of our lives. That’s where the friends come in.

My mother sent me an article about a little girl who’s EA/TEF was being monitored by a specialized clinic at Columbia NY Presbyterian Hospital, right in our neck of the woods. This was the first child I had ever seen on the internet who was thriving despite her condition. My desire to connect with literally anyone who could relate had me throwing all caution to the wind and before I knew it, I had found this girl’s mom on Facebook and boldly sent her a message. When she responded, I broke down in tears. This was my first friend in the EA/TEF community. I’ll never forget the day we finally met her in person. I have my own mom to thank for sending me that article because ultimately she helped me find the courage to begin building my own support system in this new and overwhelming community.

Fast forward to 7months old.  A laryngeal cleft was diagnosed, adding to the complexity of Indie’s EA/TEF. In the interim, we had joined the clinic in New York and I was actively using this blog’s platform and the power of social media to connect with many other EA/TEF families. I’ve come to realize that the first thing parents do after their child receives a diagnosis is to start googling… and one of the first articles to come up for EA/TEF is Indie’s birth story. At this point in time, about 2 years later, nearly 50 moms and dads have reached out to me blindly, the same way that I had done mere months before. 

Having these connections has made Indie’s journey an easier one for me as a new mom. Whether in the flesh or online-only, the friends we’ve made who share this unique bond have brought so much joy to our lives. Navigating the complexities of her anatomic differences has been much easier than I thought it would be a few weeks after leaving the NICU, and watching others who have gone through it all brings a kind of comfort that’s hard to put into words. If you are raising a child with special needs, I cannot stress enough the importance of finding a friend or two (or fifty!)  in the same boat, even if it means you need to initiate the conversation and hope for the best – because in the end, I can assure you it will be worth your while.

As of today, Indie eats a wide variety of foods with ease. She occasionally needs help passing food through her reconstructed esophagus, but for the most part, it is functioning beautifully as it should. She is off all medications. She remains on thickened liquids to protect her airways, and a laryngeal cleft repair surgery is in her future. She is 95% on the height and weight charts, growing like a weed. Most importantly, she is happy – healthy – and thriving. All we’ve ever wanted for her life. Strengthening the bond of the EA/TEF community is something I will continue to strive for – because a tight and vocal community will ultimately lead to more answers and solutions for these miraculous people.

And as I mentioned before – even if you aren’t raising an EA/TEF kid – all little humans require so much patience, lots of instinct, and a good support system. Don’t ever be afraid to reach out to another parent to pick their brain. Doing so truly saved me during the most challenging few weeks of my life, and continuing to do so brings so much joy to my motherhood.

“I get by with a little help from my friends.” – Joe Cocker