EA/TEF Awareness Month, 2014
January.
A month for blustery weather, New Year’s resolutions (watch for our guest blogger resolution series beginning on Monday, January 6), and EA/TEF Awareness Month. Different Dream is all about raising awareness about EA/TEF because my son was born with the anomaly way back in 1982. His repair was successful, and he’s now living his own life.
Why to Raise Awareness of EA/TEF
But EA/TEF occurs in every 3,000–5,000 births, and the families of those babies need informed support groups surrounding them. They also need the support of other families who’ve experienced what they’re going through, places to go to ask questions and read about what’s being done for kids with EA/TEF. Those kinds of groups weren’t available when our son was born, and I remember sitting in the hospital, overwhelmed by aloneness and ignorance.
Where to Find EA/TEF Support
Thanks to the internet, parents no longer have to experience that kind of loneliness and ignorance. Support groups abound on websites and Facebook. This list is a good place to start learning and connecting.
- EA/TEF Family Support Connection
- EA/TEF Family Support Connection Facebook page
- BabyCenter.com’s EA/TEF support group
- US Bridging the GAP EA/TEF Facebook page
- Kids born with Tracheoesophageal Fistula (TEF) & Esophageal Atresia (EA)
EA/TEF Awareness Month Posts from the Past
Now, to make it easier for you to find posts from previous EA/TEF Awareness Month, here’s a second list of readers’ faves:
- You Might Be a Parent of an EA/TEF Child If…
- Fascinating Stuff: The History of EA/TEF Treatment
- An EA/TEF Top Ten List: 30 Years Later
- Why Christine Lester Almost Missed EA/TEF Month, Part 1
- Why Christine Lester Almost Missed EA/TEF Month, Part 2
You can find more posts about EA/TEF Awareness Month by typing that phrase into the search box.
Now It’s Your Turn to Raise EA/TEF Awareness
The best way to raise EA/TEF Awareness is to tell our stories. So if you’re a survivor of EA/TEF or the parent of a child with the condition, tell your story in the comment box. We’d all love to hear them and celebrate each life.
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By Jolene
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities.
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Wow, Victoria you have had quite a journey. It sounds like Moses and his twin are doing well. Hang in there with the food issues. They will get better as time goes on. I’m glad you’ve hooked into some support groups!
My son Moses was born with EA/ TEF. He is a twin and they were born at 35 weeks. I had no idea u til he was born that he had this. I was 20 and extremely terrified. He had his surgery at 2 days and stayed in the nicu for 3 weeks. He was on a breathing ventilator for 2 weeks and finally opened his eyes and I was able to carry him shortly after. It was the most amazing feeling ever to finally home my son. It was dedietnly a challenge feeding him. I had to lay him on his side let him take 3 sips and wait for a little bit then give him 3 more. It took almost an hour to feed him each time and with having another child the same age to take care of was also another huge challenge in itself. Moses in now 15 months old and has only needed one dilation, which was last month. I still struggle to figure out what foods he can and cant tolerate. But I’m learning. I absolutely love that I found support groups. I have never met anyone going through this and it really helps to read others stories.
Kate,
Thank you for introducing us to Henri. From what you said, he is making an amazing recovery. I know how scary the surgery and NICU stay must have been. But, like you, after listening to other parents in support groups, I am grateful our son’s EA/TEF was isolated to that one anomaly.
Best wishes to your family,
Jolene
Our sweet boy Henri was born with a short gap EA/TEF type C on July 25th 2013. It was unknown to us throughout pregnancy and the first 36 hours of his life. It was passed off by doctors and nurses as a quick delivery and just lots of mucus. It wasn’t until I was feeding him right before we were about to go home and he couldn’t breathe and started choking. He went to the NICU for a few hours where he didn’t improve, then had x-rays the next morning where his TEF was discovered. Being in a small Northern Ontario town our hospital was not equipped so Henri and I took a flight south to London for surgery. I remember feeling so helpless not knowing what was happening or the outcome. This being our third child I had no prepared for anything to go wrong. I remember holding my sweet boy in my arms through the night waiting to speak to the surgeon the next morning. Surgery went splendid, and his recovery was very quick, much quicker than expected. We came home 2 weeks later and have been running uphill for the past 5 months. Henri is an amazing little guy, he’s always happy, smiling at his brother, sister, father and I. We are so blessed to have him. He tried solid food for the first time yesterday and I never expected to be so excited and anxiety ridden over such a simple seeming milestone. After joining an online support group I see how lucky we were with just the isolated EA/TEF and will count my blessings every day.