Fascinating Stuff: The History of EA TEF Treatment

by JoleneJan 17, 2012Different Dream Series, Products14 comments

Hey everybody, welcome to this week’s EA TEF Awareness Month Tuesday feature! As you many recall, in the January 4th post, you learned 10 reasons to mark EA TEF Awareness Month. Last Tuesday, you learned how being the parent of a child with EA TEF inspired me to do what I do. You were invited to leave a comment at the end of that post to be entered into a drawing for a free book.

For this week’s post, I’d hoped one of DifferentDream.com’s EA TEF guest blogger moms would guest post. But their EA TEF Awareness Month has been consumed with EA TEF complications in their kids. So keep them in your prayers as they advocate for effective treatments.

Even though guest-blogger mom Christine is preoccupied with her son’s concerns, she found time to send a link she recently found. It gives the most complete summary of modern medical history of EA TEF treatment either of us have found. After poking around at the site and trying to contact it’s creators, I’ve concluded that they are no longer actively tending it. Still, it is worth reading. My gratitude for several generations of surgeons and for parents who consented to experimental surgeries and autopsies on their EA TEF babies (long before the condition was named and abbreviated) grew with each paragraph read. Our children are alive because of these medical pioneers and grieving, gracious parents.

A Personal Connection to Dr. Keith Ashcraft

In the introduction to the history, two surgeons are given credit for compiling much of the background information: Dr. Nate Myers and Dr. Keith Ashcraft. My jaw dropped when Dr. Ashcraft’s name popped up. In 1997, he removed two-thirds of our son’s lower esophagus because it was believed to be pre-cancerous. His skill, compassion, and manner with our then 15 year-old-son were impressive. So impressive that in 2007, I asked Dr. Ashcraft for an interview while researching what became my first book, A Different Dream for My Child: Meditations for Parents of Critically and Chronically Ill Children. Many of his insights are included in the book. He’s also the fellow in the picture above.

The History of EA TEF Treatment

Without further ado, here’s the link to the page titled What Is EA TEF?. Once you’re done reading that, you might want to check out this link about how EA TEF is treated. And if you have a magnifying glass and a great deal of perseverance, this chapter from a book on pediatric surgery gives a very thorough history of EA TEF awareness and treatment.

Would You Like to Say Thank You?

Our family is so grateful to the surgeons who gave our son a second chance to live: Dr. Schwartz and Dr. Pinch at the University of Nebraska Hospital in Omaha, Dr. James Hopkins at Blank Children’s Hospital in Des Moines, and of course, Dr. Keith Ashcraft at Children’s Mercy Hospital in Kansas City.

Is there a surgeon, GI doctor, nurse, therapist, or other health care professional you would like to thank? If so, leave a comment in the box below. Think of it as a chance to recognize those who gave your child the gift of life and to add your personal twist to the history of EA TEF treatment. I can’t wait to hear about the people who helped your family.

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By Jolene

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Dig!, the fourth book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2024.

14 Comments

Jolene on April 3, 2017 at 8:42 am

Missy,

Thank you for your comment about Dr. Ashcraft. I am in total agreement with them. Dr. Ashcraft has touched the bodies and hearts of so many children and parents. How can we ever thank him for all he has done?

Jolene
Missy on April 3, 2017 at 5:10 am

My son was born with VATERS syndrome inv1991 and Dr. Ashcraft was his surgeon. Levi is my first child and as a first time mom at 21, I was scared beyond words of what was happening. Dr. Ashcraft not only did amazing things for my child but gave me piece of mind in difficult times. My family was blessed to have him care for my son and he will always have a place in my heart. Levi is now almost 26 and has a beautiful daughter of his own. There are some people in your life that can not be thanked enough for what they added and Dr. Ashcraft is one of them!
Jolene on February 1, 2015 at 11:10 am

Isn’t the economy of God a marvelous thing, Laura. How wonderful it is to hear the story of an EA/TEF adult survivor!
laura Maikata on January 31, 2015 at 9:16 am

I wish the history link still worked!! I would love to read it.

And a shout out to the doctor who saved my spouse’s life in 1981 and the nurse in the delivery room that immediately recognized the symptoms of TEF and made sure he wasn’t nursed until they could confirm the condition. And the pulminologist in MN that finally understood his condition and why he kept getting sick and put him on an agressive treatment plan as a late elementary school kid. And his dad for perfecting the Heimlich maneuver and his mom for homeschooling him until 7 and being a stay at home mom so when he got sick she could care for him.

All of these people kept my spouse alive, and I couldn’t imagine life without him.

In turn he taught me to live life without scented candles or open fires or pets or carpets — all this gs that could aggravate his scarred lungs– and we built parts of our lives around this this– so that when we brought our preemie home our world was already set
Jolene on January 29, 2015 at 9:46 am

Hooray for Dr. Pablo Laje and CHOP. Thanks for the shout out, Melissa!
Melissa Nocero on January 28, 2015 at 10:57 am

Dr. Pablo Laje from Children’s Hospital of Philadelphia. Saved my son, Nico’s life and to all of the staff at CHOP for saving mine, it’s been a real adventure, but can’t imagine it any other way. My son is my hero;)
Jolene on January 21, 2012 at 4:11 pm

Lori,

Thanks for sharing Dr. Jennings and Nurse Renee with us. They deserve a shout out.

Jolene
Jolene on January 21, 2012 at 4:09 pm

Kuddos to three more heros!

Jolene
Lori on January 21, 2012 at 2:44 pm

Thank you to Dr. Jenning’s for all he did for our son Brandon. Even putting up with and listening to my mama bear trantrums. He always listened and always said “Mom knows better than anyone and their instincts are always right.” And a VERY special thanks to Nurse Renee who will always be a part of our lives in so many ways. When our son stopped breating, she brought him back to us. We will forever have a speical bond with Renee.
Lisa Wilson on January 20, 2012 at 11:35 pm

Dr. Karen Cartwright, Dr. Diana Farmer, Dr. Shinjiro Hirose
Jolene on January 18, 2012 at 12:19 pm

Heather,

Thank you for recognizing these often unsung heroes. As parents of kids whose lives were saved because of them, public thanks seems like too little too late. But my guess is these docs find our thank yous the most gratifying part of their work.

Jolene
Heather Greywolf on January 18, 2012 at 11:39 am

Dr. Mark Puder, Dr. Russell Jennings and Dr. Victor Fox at Children’s Hospital Boston. Dr. John Foker of Minneapolis, MN.

Dr. Puder was Kestrel’s (EA/TEF, Type C, short gap) repair surgeon, and is an extremely skilled, compassionate, AMAZING doctor. Dr. Victor Fox is her GI specialist, and has done every surgical procedure she has had since her connection.

Dr. Russell Jennings is our resident EA/TEF guru at CHB. He has not treated my daughter, but I have seen him save the lives of countless EA/TEF children when other doctors thought all hope was lost. He has successfully reconnected children who no one thought would ever be able to eat by mouth. In short … he’s amazing. His skills are only matched by the size of his heart. You couldn’t ask for a better doctor or a more compassionate, caring person to work on your child.

Finally, Dr. John Foker, without whom many of out long-gap kids would never have been successfully reconnected. His affiliation with Children’s Hospital Boston has made it possible for the Esophageal Atresia Treatment Center to exist, and for our doctors to become some of the leading experts worldwide in EA/TEF. There are no words to measure what a deep debt of gratitude we all owe him.
Jolene on January 17, 2012 at 8:41 pm

Hooray for Dr. Albanese!

Jolene
Jayson on January 17, 2012 at 5:41 pm

Dr. Craig Albanese at Stanford did the primary repair on our son thoracoscopically in Jan 2010. It was an amazing success!!