The Birth of EA TEF Awareness Month

Founder Lori McGahan tells about why and how EA TEF Awareness Month began and how it connects families.

With the arrival of January 2011, the first ever EA TEF Awareness Month began. (To get the scoop on that alphabet soup, check out last week’s post.) In today’s post Lori McGahan, the founder of EA TEF Awareness Month explains how it came into being.

Meet Lori and Brandon McGahan

My name is Lori and I am a mom of an EA/TEF child. My son, Brandon, was born in 2007 and diagnosed day 2 of his life with Type C long gap EA/TEF with a distal fistula, severe tracheomalacia, heart defect, kidney reflux, as well as complications which occurred during treatment of this birth defect.

During our journey, we found it to be a very lonely journey as well as felt there was such a lack of information.  We were always compelled to ask the following questions with no definitive answers:

  1. Why is there not more information and/or resources pertaining to EA/TEF?
  2. Where are the support groups for us and where are the other EA families we can be connected with?

Why It’s Hard to Connect EA TEF Families

We learned during our journey that there is not a lot of information regarding EA/TEF as it is a rare birth defect and can come in many different variations. We also learned, that it was extremely hard to be connected with other families via the hospital and or other facilities as they are grounded by HIPAA guidelines. HIPAA essentially means that hospitals are NOT allowed to give out family names and/or diagnosis, therefore, their ability to connect EA families together is impossible.

Brandon’s Run

In October of 2007, we started Brandon’s Run to raise awareness and to raise funds for research pertaining to this birth defect.  Our hope was that we would also find a way to connect with other EA Families. While our efforts to raise funds were good, by 2009 we still had not met any other families with an EA diagnosis. Due to this aspect, I spent a lot of time researching on the internet, found a wonderful EA support group on Facebook to connect with.

Bridging the Gap of EA TEF

In collaboration with other EA families, results from my surveys and with help from the EA Treatment Program at Children’s Hospital Boston, the Bridging the Gap of EA/TEF Facebook page was born.  It is also due to this that when we held our 4th Annual Brandon s Run in September of 2010, we were able to connect with other EA families and meet these families face to face.  This was an overwhelming joy for us, as prior to that we had never met and/or spoken to another EA family.

What We Have in Common

It amazes me how in the past year, BTG has grown so much and with the help of other EA families we have been able to initiate the first annual Worldwide Esophageal Atresia and Tracheoesophageal Fistula Awareness Month currently being held.  It is my sincere hope, that Bridging the Gap of EA/TEF will help better connect EA families with resources and face-to-face support within their states that we all so much need. While all of our journey’s vary just a bit, we all have one common theme, a child born with EA/TEF.

Leave a Comment

If you’re the parent of a child with EA/TEF or an adult who had EA/TEF repair, please leave a comment. Lori would love to hear your story, and so would I.

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11 Comments

  1. Ember Ember
    January 13, 2011    

    My daughter was born in 2007 with EA/TEF and a tethered spinal cord. She was very lucky and she hasn’t had any complications or issues since the first year of her life. It was extremely scary when she was in the NICU and then during subsequent hospital stays when she was a baby. There was so little information and no where to turn. I’m so glad you guys have been working on bringing people together. It will be an invaluable resource for parents going through what I went through four years ago. My daughter is now a happy, healthy bean of a four-year-old – she goes to preschool and dance classes. Sometimes we look at her scars in the mirror and I tell her how beautiful they are – how they’re absolute proof of how amazingly strong she is.

  2. January 13, 2011    

    I’m so glad to hear your daughter is doing well. Please pass along the word about EA/TEF and Bridging the Gap to other parents. No one should have to go it alone like we did.

    Jolene

  3. January 14, 2011    

    Ember, I am so glad to hear your daughter is doing so well! I certainly hope all of our efforts, with the tremendous help of fellow EA families, will bring more awareness, resources and family support for EA/TEF. We too tell Brandon his scars are a testament of how special and strong he is. He is so proud of them!

  4. January 14, 2011    

    I am thankful at how much information I have found in the last year about EA/TEF and how many EA moms I have been able to connect with. My daughter Lydia, one of a triplet, was born with EA/TEF and right hypoplastic heart. I was so stressed about her heart condition that when I found about the EA/TEF I just thought, yet another surgery… Besides she only had a 2cm gap and it should be able to be connected. If only I had done more research one year ago, our lives would be drastically different. Lydia has been hospitalized all of her 14 months and is continuing to have surgeries (#16 today) to connect her esophagus in Boston after a botched surgery in Kansas City left her with a spit fistula and a surgeon who told us that “at least a live baby is better than a dead one.” I hope I can continue to spread her story so these children can be sent to specialty centers early on and given the best possible chance for a normal life.

  5. January 15, 2011    

    I’m so sorry to hear about your daughter’s botched surgery in KC. Our son had surgery there several years ago and benefited from the expertise of one of the top pediatric surgeons in the country. But he has since retired, and his absence is a great loss. May your little girl make big improvements this year!

  6. luvsdestiny4 luvsdestiny4
    March 20, 2012    

    My son who was born 5 months ago was 6 weeks premature and diagnosed with ea/tef and a nasal Artesia. The sad thing was I had no idea what I was in for or even heard of it before. My son had his first surgery at 2 days old for the ea/tef and so far it has been a success he had his second successful one at about two weeks old for his nasal artesian..and then had a gtube put in which he stills has but can eat by mouth too..this was the scariest thing I ever faced in my life and I wish I had known what it was before this happened…i for sure felt alone and clueless…

  7. March 20, 2012    

    Oh, I know how you feel. It is such an alone feeling. Have you found a support group? There’s a great one on Facebook. Just go to FB and search for TEF.

    Jolene

  8. Lori Dubois Lori Dubois
    December 4, 2013    

    I was born with EA/TEF in 1963. I had 5 major surgeries during the first 1 1/2 years of my life to fix my esophagus. Today I am 50 years old. I have been looking for others who have grown into adulthood with EA/TEF to see what long term issues they have had. My quality of life has been fairly good. I have become accustom to restrictions I have had to endure as I grew older. I have dealt with a restrictive lung volume. Last PFT results showed I had 60% lung volume available. I also have had increased issues with GERD having issues a couple of nights each week. Luckily my surgeon from 1963/64 is still alive and is working with me today to find a surgeon who specializes in GERD that will be able to understand my case and what to do to hopefully improve my QOL going forward. I think alot about how much life I have left to live due to the long term affects of EA/TEF.

    I am a very positive and optimistic person. I hope to hear from others soon!

    Regards,
    Lori

  9. December 4, 2013    

    Hi Lori,

    How nice to hear from you. Thanks for sharing your situation here. Unfortunately, I don’t know of any adult groups for EA/TEF. However, Facebook has several parent groups, and you may want to post your query on their pages. Just go to Facebook, search “EA/TEF” and they should show up. Please check back in if you do find an adult group. I’d like to pass the information on to our son.

    Jolene

  10. Tiffany Tiffany
    January 11, 2014    

    I was born in ’87 and I currently have 3 large scars from EA/TEF. I’m sure the surgeries now leave a lesser number or smaller scars. I’ve only recently become comfortable in my body because these scars have been disfiguring and I received some harsh words from childhood schoolmates. If you are a parent, be prepared to help your child with self image, physical health and confidence. Emotional complications through adolescence may be lowered self esteem in being in a bikini around friends and in forming romantic relationships. I think that I overcame a lot of my self esteem (in a bathing suit and in romance) by pursuing a medical career–having lots of medical students as friends has made it easier because when I’m in a bikini everyone thinks the story of having EA/TEF as cool and interesting because they are intrigued by the things they read in books. Dating someone with this mind state has also helped. I am finally more comfortable in my own skin but I cannot imagine what it would be like to have to cope with the disfigurements with a different peer group. The reason why these scars are so disfiguring is because they form adhesions and those are impossible to remove (from what I’ve learned in class). Luckily, in being healthy and lean, these adhesions are not as disfiguring as they would otherwise be if I had a different body shape. But it is pretty amazing to say that having surgery saved my life and just left cosmetic side effects. Not bad! That’s actually pretty nice! And if you raise your child to be confident and to take care of their health, the insecurities that come with growing up will eventually lesson. But make sure they don’t sell themselves short by dating a less than ideal partner or by hiding under a tshirt at a pool party. It’s superficial and sort of silly, but feeling “disfigured” is an awful way to feel…and it is hard to relate to others about it because most people can just go out and get implants or take a diet pill…and it is especially hard to deal with the sense of having a distorted body image during and after puberty. Puberty and growing old already freaks out the average person–just always remember that your child may require some extra coddling in that area compared to their peers.

  11. January 12, 2014    

    Hi Tiffany,

    Thank you for being transparent about the body image issue. Also, it’s very interesting that you are going into the medical field. You will come at it from a unique perspective!

    Jolene

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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