matt's blog

After a very long outage, the discussion forums are back online. Thanks for your patience.

Hi all,

Logging in to our discussion forums had been broken for quite some time (months!). I was finally able to track down the problem(s), and you should now be able to log in again. (I'm still working out the kinks.) Please email matt at eatef.org if you need help or if you notice something broken.

Sorry for the long outage!

-Matt

Sandi, who created this organization twenty-six years ago, recently wrote in with an update about her daughter, and some words of encouragement for others. Thank you, Sandi, for helping and inspiring so many people by getting this going!

Nationwide Children's Hospital, in collaboration with the American Academy of Pediatrics Section on Surgery is conducting research related to the care of children with esophageal atresia and tracheo-esophageal fistula. The study examines issues related to transition of care (from pediatric to adult health care providers) and consists of a single, web-based survey for parents (and even older adolescent / young adult patients). The survey length varies depending on clinical history, but time to complete all questions should be less than 15 minutes.

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

Thanks to Laura and her family for writing this inspiring blog entry http://www.preemiebabies101.com/2015/06/advice-former-tef-preemie-now-pr...

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.

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

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.

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.