The EA/TEF Family Support Connection was formed by and for families of children born with (Esophageal Atresia and Tracheoesophageal Fistula) EA/TEF and the medical professionals who treat them. We are dedicated to providing educational resources as well as emotional and practical support to aid in the daily care of our medically fragile children.

Welcome

Welcome to the EA/TEF Family Support Connection.

We developed this web site to help you learn as much as possible to understand Esophageal Atresia/Tracheoesophageal fistula (EA/TEF). We have included a non-technical description of EA/TEF, along with lists of support groups and publications that can assist you in your search for knowledge.



Some words of encouragement from a community member

Someone would like to share some anonymous words of encouragement. Thanks, anonymous! If you'd like to share something, you can email me at matt@eatef.org, or send a private facebook message to EA/TEF Family Support Connection.

"My spouse, born in the early 1980s, was born with a TEF. He was born as a third trimester preemie. By luck alone he had a NICU nurse attend his delivery, and she noticed excess amniotic fluid and some other signs of TEF. She told my mother in law not to nurse him, and went off to grab a doctor.

Please help keep eatef.org going!

Our website domain name is up for renewal again. Thanks to your generosity last time, this year's bill is almost paid. If you'd like to ensure that our website continues its global reach, this is the perfect opportunity to make a donation directly to the web hosting provider, which accepts donations on behalf of the organization. It is $120 per year, so getting just 12 donations of $10 each will cover a full year. Thanks to everyone who contributed last time, and thanks in advance for helping to keep this going for the future!

The recurrence risk for siblings is 1%

I'm frequently asked if I know how likely it is to have another child with EA/TEF. The official answer, according to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884133/

"The overall risk of oesophageal atresia recurrence in a sibling of an affected child is about 1%."

This refers to having another child from a different pregnancy. In a twin, esophageal atresia is 2 to 3 times more common.

New Esophageal Center at Cincinnati Children's Hospital Medical Center

Esophageal Center features the multidisciplinary expertise to treat children with even the most complex esophageal disorders, such as esophageal atresia (EA) and tracheosophageal fistulas (TEF).

http://www.cincinnatichildrens.org/esophageal-center

http://www.youtube.com/watch?v=wfVMYGF0XBw

Bianchi Thoracotomy

Dr. Edwin Jesudason writes:

"In Liverpool, we have been using a technique first described more than 10 years ago in Manchester, UK by Adrian Bianchi - to make use of an incision that is hidden in the armpit. This is called the axillary approach and is very cosmetic. I should be grateful to know if you or your members are familiar with this approach and what level of awareness there amongst surgeons about using this technique to successfully hide the thoracotomy scar high in the armpit."

If anyone is aware of this technique, please let me know at matt@eatef.org

Joe G's story

Joe G. writes in from Denver, Colorado:

Joe: I was born with Esophageal Atresia in 1958, Denver Colorado. I beileve my esophagus was only an inch or two at the most. They waited until I was 2 years of age and then went in through my back and used the intestine to make the rest of the esophagus. I still have all the articles that the Rocky Mountain News ran on me during that time. I know how hard it was for my folks. I always felt if I could be any help to a young faimily that could see a person who is now 53 healthy/ married/ kids etc I would be more than happy to.

Reglan FDA warning

Many EA/TEF patients are diagnosed with GERD (gastroesophageal reflux disease), and Reglan is a common drug prescribed. The following is a US FDA warning about Reglan, which may affect some people. Please talk to your doctor about any questions you may have.

From http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm142815.htm#Reglan

Reglan and Nervous System Disorder
On Feb. 26, 2009, FDA warned against the long-term use of drugs that contain Reglan (metoclopramide).

Congratulations to Rowan in Paris!

Congratulations to Rowan in Paris for your shiny new baby!

First International Workshop on Esophageal Atresia

The First International Workshop on Esophageal Atresia will take place in France in the Spring of 2010. Doctors will gather to discuss topics such as genetics, surgical procedures, reflux, complications, and quality of life issues.

http://www.esophageal-atresia2010.com/

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