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.

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."

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/

A Pioneer EA/TEF Baby

by Claudia Z., Spring 1999

In 1953 Claudia was one of the earliest survivors of EA/TEF. In 1988, she was repaired for a second time at the age of 35. Ten years later she made her first connections to the EA/TEF community. Now Claudia, and her surgeon Dr. Juda Jona, share her story with us.

Lane's Story

by Amy D., Fall 2002

Our precious baby boy was born. Oh, I felt so much relief that he was finally here, September 20, 1998, after a long 36 weeks. As I received a thumbs up from the observing pediatrician, I felt relieved and ready for rest. As I was moved into a private room, my husband went with the baby to the nursery. After 20 minutes went by I was so ready to see my new bundle of joy! No one was around, no nurse, no relatives--it seemed as if I was the only one in the hospital.

Update from Zach

We love hearing updates from people. Here's one that came in recently:

Now on Facebook

I've finally gotten around to creating a Facebook page for us:

http://www.facebook.com/pages/EATEF-Family-Support-Connection/78418175958

Enjoy!

Seeking volunteers for a phone study

We would like to have some parent input regarding what medical information they would like to have regarding EA/TEF and ongoing care and issues. Time commitment would be 1-2 phone conferences a month for possibly a few months.

Please private message me or email me if interested. We're looking to have the first phone conference at the end of May.

Thanks,

Matt

Pages

Subscribe to EA/TEF Family Support Connection RSS