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Deprecated: mb_substr(): Passing null to parameter #1 ($string) of type string is deprecated in /home/mapar70/drupal-7.82/includes/unicode.inc on line 593 EA/TEF Family Support Connection
http://www.eatef.org
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.enDiscussion forums back online
http://www.eatef.org/node/58
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>After a very long outage, the discussion forums are back online. Thanks for your patience.</p>
</div></div></div>Fri, 10 Dec 2021 05:26:17 +0000matt58 at http://www.eatef.orghttp://www.eatef.org/node/58#commentsDiscussion forum logins still broken
http://www.eatef.org/node/57
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hi all,</p>
<p>Logging in to our discussion forums had been broken for quite some time (months!). <s>I was finally able to track down the problem(s), and you should now be able to log in again.</s> (I'm still working out the kinks.) Please email matt at eatef.org if you need help or if you notice something broken.</p>
<p>Sorry for the long outage!</p>
<p>-Matt</p>
</div></div></div>Wed, 27 May 2020 18:07:03 +0000matt57 at http://www.eatef.orghttp://www.eatef.org/node/57#commentsUpdate from organization founder Sandi
http://www.eatef.org/node/56
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>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!</p>
<p><cite>Hi! I just wanted to touch base and say how thankful I am that this site is still available for families! I started this organization in 1992 when I realized that I needed help managing every day situations that come up when a child has EA/TEF. My daughter’s doctor gave me the names and numbers of other parents, and I contacted them to hold our first meeting. My daughter, Jennine, had a difficult and complicated journey that included a stroke, having a trach until she was 16, and finally having a life-saving surgery of having entire esophagus removed at 19 y/o. Despite the hard road, I wanted to give other parents hope because she is now 27, has lived in an African village as a missionary, is married, and now expecting her 1st baby in a couple of months! I know days and seasons can be very hard with EA/TEF, and positive endings helped to give me hope when Jennine was little. I hope her story gives another parent hope that their child can have a wonderful and fulfilling future! Blessings to all! Sandi Moore (Masi)</cite></p>
</div></div></div>Wed, 12 Dec 2018 03:27:37 +0000matt56 at http://www.eatef.orghttp://www.eatef.org/node/56#commentsNationwide Children's Hospital research survey
http://www.eatef.org/node/55
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>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. No identifying information is required, although email addresses can be provided (optionally) if you wish to participate in a future survey that examines quality of life for children with esophageal atresia and tracheo-esophageal fistula. More information is available at: <a href="https://goo.gl/f1CMTm">https://goo.gl/f1CMTm</a></p>
<p>Collecting data for the EA/TEF research community is of vital importance. Even if you have participated in previous research surveys, please take the time to participate in this one as well.</p>
<p>Thanks!</p>
<p>Link to survey: <a href="https://redcap.nchri.org/surveys/?s=X4K94DWDLK">https://redcap.nchri.org/surveys/?s=X4K94DWDLK</a></p>
</div></div></div>Fri, 20 Apr 2018 19:46:22 +0000matt55 at http://www.eatef.orghttp://www.eatef.org/node/55#commentsSonoma Academy student's guest at school: Surgeon who operated on him as newborn
http://www.eatef.org/node/54
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>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:</p>
<p><a href="http://www.pressdemocrat.com/article/20130825/articles/130829693">http://www.pressdemocrat.com/article/20130825/articles/130829693</a></p>
</div></div></div>Mon, 04 Jan 2016 04:59:31 +0000matt54 at http://www.eatef.orghttp://www.eatef.org/node/54#commentsAdvice from a Former TEF Preemie, Now a Preemie Dad
http://www.eatef.org/node/53
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>Thanks to Laura and her family for writing this inspiring blog entry <a href="http://www.preemiebabies101.com/2015/06/advice-former-tef-preemie-now-preemie-dad/">http://www.preemiebabies101.com/2015/06/advice-former-tef-preemie-now-pr...</a></p>
</div></div></div>Mon, 04 Jan 2016 04:35:48 +0000matt53 at http://www.eatef.orghttp://www.eatef.org/node/53#commentsUW-Madison Study Published
http://www.eatef.org/node/52
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>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:</p>
<p><a href="http://www.ncbi.nlm.nih.gov/pubmed/26692337">http://www.ncbi.nlm.nih.gov/pubmed/26692337</a></p>
<p>Special thanks to Shannon Struckmeyer for initiating this survey.</p>
</div></div></div>Mon, 04 Jan 2016 00:50:53 +0000matt52 at http://www.eatef.orghttp://www.eatef.org/node/52#commentsAbigail's Smile
http://www.eatef.org/node/51
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>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! <a href="https://www.createspace.com/3933713">https://www.createspace.com/3933713</a></p>
</div></div></div>Thu, 26 Mar 2015 14:23:46 +0000matt51 at http://www.eatef.orghttp://www.eatef.org/node/51#commentsAn EA/TEF Story Inside And Out
http://www.eatef.org/node/50
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p><a href="http://www.eatefbooks.com">http://www.eatefbooks.com</a><br />
Every year when school starts, parents get anxious about how to "explain" their EA/TEF child to their community at school.</p>
<p>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. </p>
<p>The book is designed to empower children, educate the public and give ways for others to help. The story is meant to serve as an interactive platform where kids could use the book to start a conversation on what EA/TEF means in their particular lives.</p>
<p>It is available worldwide in Amercian or British spelling. Coming soon in French, looking for other languages as well if someone would like to volunteer.</p>
<p>Check out the book at <a href="http://www.eatefbooks.com">http://www.eatefbooks.com</a> and please share the link on Facebook!</p>
</div></div></div>Sun, 22 Mar 2015 17:02:57 +0000matt50 at http://www.eatef.orghttp://www.eatef.org/node/50#commentsSome words of encouragement from a community member
http://www.eatef.org/node/49
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>Someone would like to share some anonymous words of encouragement. Thanks, anonymous! If you'd like to share something, you can email me at <a href="mailto:matt@eatef.org">matt@eatef.org</a>, or send a private facebook message to EA/TEF Family Support Connection.</p>
<p>"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.</p>
<p>Surgery was performed within the first few days of life. He didn't do great on the operating table, but pulled through. In his early life, with all his scar tissue, the heimlich maneuver became a common household occurrence. His dad would whisk him away to the other room so that his mom wouldn't notice that he was choking again. Eventually he grew out of this, and no one loves food more than him now.</p>
<p>He has several children, none of whom inherited the defect. He's a happy, relatively healthy adult. We joke about his second belly button (from his feeding tube) and talk about how he gained his other scars on his belly and ribs (sword fighting ninjas), with places where a tube was put into his lungs "bullet holes" from a fight he'd prefer not to recall in mixed company. Besides an overactive imagination, his life is relatively normal.</p>
<p>He has scaring in his lungs, can't be around smoke for too long, prefers life in a hard wood (rather than carpeted) home, and about once or twice a year a cold goes into his lungs and causes issues. He keeps up with his pulminologist and takes maintenance drugs, and that helps.</p>
<p>He doesn't know any differently, though. And as his spouse, I learned more about the life-saving surgery and his tendency to illnesses only a ways into our dating relationship. I'd known his story was a hard one, but he had been basically just a normal guy all the years I'd known him.</p>
<p>His mom home schooled him until second grade, and once he started school, he fought many battles with pneumonia. This taught him to love reading, and also taught him to take an impending illness seriously and get some rest.</p>
<p>He has his doctorate now. He's well published in his field and very successful at his job.</p>
<p>At the beginning of a journey like this, it's hard to see the road before you. I wanted to pass a bit of hope on to other parents."</p>
</div></div></div>Mon, 25 Nov 2013 16:12:55 +0000matt49 at http://www.eatef.orghttp://www.eatef.org/node/49#comments Deprecated: mb_substr(): Passing null to parameter #1 ($string) of type string is deprecated in /home/mapar70/drupal-7.82/includes/unicode.inc on line 593
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