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.


Sonoma Academy student's guest at school: Surgeon who operated on him as newborn

Here's an update from Dr. Foker's second patient, Logan Ebert, who was also featured in one of our original 'Family Stories'. They are extremely pleased with the results from Dr. Foker, and are eager to share their story:

http://www.pressdemocrat.com/article/20130825/articles/130829693

UW-Madison Study Published

A big "Thank You" to all who participated in the University of Wisconsin-Madison questionnaire. Your participation helps the medical community better understand the need for long-term care, especially with respect to reflux. The results were recently published, and can be seen at the following link:

http://www.ncbi.nlm.nih.gov/pubmed/26692337

Special thanks to Shannon Struckmeyer for initiating this survey.

Abigail's Smile

Ami Hays wrote this children's book about EA/TEF for all of you to have a book in your home that your child can understand about EA/TEF. The illustrations and short story open up the conversation and allow your child, there siblings, and friends to see who a EA/TEF child is. It can be purchased below and funds raised go to EA/TEF! https://www.createspace.com/3933713

An EA/TEF Story Inside And Out

http://www.eatefbooks.com
Every year when school starts, parents get anxious about how to "explain" their EA/TEF child to their community at school.

Vanessa Munsch created "An EA/TEF Story Inside And Out" to ease that conversation. The story is framed within a "Sharing Time," which is a moment when children get to share something about themselves in front of their class.

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

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