Liaison/Coordinator: Lori
email: lorimcgahan@yahoo.com
Hello and WELCOME to BTG. My name is Lori and I am a mom of an EA/TEF child. My son, Brandon, was born in 2007 and diagnosed day 2 of his life with Type C long gap EA/TEF with a distal fistula, severe tracheomalacia, as well as some other birth defects that formed during gestation.
During our journey, we were always compelled to ask the following questions with no definitive answers:
1. Why is there not more information and/or resources pertaining to EA/TEF?
2. Where are the support groups for us and where are the other EA families we can be connected with?
We learned during our journey that there is not a lot of information regarding EA/TEF as it is a rare birth defect and can come in many different variations. We also learned, that it was extremely hard to be connected with other families via the hospital and or other facilities as they are grounded by HIPAA guidelines. HIPAA essentially means that hospitals are NOT allowed to give out family names and/or diagnosis, therefore, their ability to connect EA families together is impossible.
Due to these two aspects, I spent a lot of time researching on the internet, found a wonderful EA support group on facebook and was able to create a questionnaire asking current EA families what they would like to see. In collaboration with other EA families and with help from the EA Treatment Program at Children's Hospital Boston, BTG was born.
It is my sincere hope, that this group will help better connect EA families with resources and face-to-face support, we all so much need. While all of our journey's vary just a bit, we all have one common theme, a child born with EA/TEF.
