Struggling with the "Beast"

I am struggling with a violent acid reflux attack tonight.  Awakened from sleep by this horrific beast, I know the only thing to do is to hang on for dear life and wait for the calm.   Once the attack has subsided I am afraid to go back to bed.  You see, gravity is my friend during these hurricanes.  My small body weakens afterwards and I have no choice but to forge on for some form of sleep as I must pick up life's daily routine the next morning.  As they say, no rest for the weary. 

My journey as an EA/TEF survivor has been difficult, experimental, sad, and unknown.  As I have taken a new turn in this strange journey there seems to be the proverbial light at the end of the tunnel to my understanding.  I am becoming more aware that EA/TEF cannot be cured just managed.  As I attended the 2nd Annual EA Conference in Montreal, Quebec, Canada, this past week, I learned a great deal more about this rare birth defect. The most important thing I realized after the conference, is that the world is taking notice in making great strides in bringing awareness to the forefront.  My new journey is not to be cured personally, but to bring awareness of EA/TEF and hope that one day this birth defect will be no more.  THIS IS MY WISH!    



Looking forward to attending the 2nd Annual Ea Conference in two weeks.   I can't wait to meet individuals like myself and hear my Mother share her experiences of raising a child with EA/TEF with parents who are currently maneuvering through what she has tackled.  I hope to meet with Dr Russell Jennings, a renowned EA/TEF surgeon, to express Christy's Courage Foundation goals and gather ideas he may have on research to prevent or correct EA/TEF before birth.  Looking forward to bringing back information to share with everyone.  Praying for safe travels and wisdom.

Peace & Blessings
Christy  

http://eamontreal2012.com/

History of EA/TEF

Hello Christy's Courage Crew!

I have been wondering about when the first actual diagnosis of EA/TEF was discovered and found this piece of information about the History of the Procedure. 

The recorded history of EA dates back as early as 1670 when Durston described the presence of a blind-ending upper esophageal pouch in a conjoined twin; however, surgical therapy for EA was not suggested until 1869. Steele made the first attempt at surgical correction for EA in 1888. He performed a gastrostomy in a patient with pure EA, hoping to perforate what he suspected to be an esophageal membrane. In 1913, Richter proposed fistula ligation with anastomosis of the 2 esophageal ends for EA with TEF. Although he considered primary repair to be the best option, he also acknowledged the impracticality of this procedure at the time. Instead, he ligated the fistula intrathoracically. His patient did not survive long enough to attempt an esophageal anastomosis.

The first patient to survive a congenital esophageal anomaly was born in 1931 with a TEF and no atresia. The fistula was repaired with a transtracheal incision in 1935, the same year that the first survivor of EA was born. The infant with EA was treated with gastrostomy feedings and a jejunal interposition. Both of these children had an isolated defect (atresia or fistula), and treatment was successful without a thoracotomy. The treatment for EA with TEF proved to be more difficult. Pneumonia, mediastinitis, poor airway control, and fluid management problems were frequent complications.

In 1936, Lanman was the first to perform a repair with an extrapleural approach. The first patient to undergo the technique survived only 3 hours. In 1938, Shaw performed the first fistula ligation and primary anastomosis of the esophagus for EA-TEF. This patient died 12 days postoperatively from a transfusion reaction.

In 1939, the first 2 successful treatments of patients with EA-TEF occurred independently, one day apart, by Leven and Ladd. They performed staged repairs involving gastrostomy placement followed by fistula ligation 5 weeks and 4 months later, respectively. Cervical esophagostomies, the use of jejunal interposition, and an antethoracic skin tube for esophageal reconstruction were use in the years to follow.

Haight completed the first successful primary repair in 1941. The procedure involved a left extrapleural approach, fistula ligation, and a single-layer esophageal anastomosis. Haight later switched to a right extrapleural approach and modified his technique to a 2-layer telescoping anastomosis in an attempt to diminish leak risk.

By 1944, one third of the children with EA-TEF survived primary repair. Advances in preoperative preparation, antibiotic treatment, and intraoperative and postoperative management contributed to more favorable survival rates. Despite the increased success, leaks, strictures, and lower esophageal segment dysmotility were common postoperative problems.

Hello Christy's Courage Crew!

I have a very exciting project I am working on to promote EA awareness in January 2013!  Stay tuned for more information.

Love Language Campaign

Beginning 7/26/12 check out Christy's Courage Love Language Campaign at www.indiegogo.com.  This campaign is to help start a scholarship to fund speech and feeding therapies for children with EA/TEF.  Your $1.00 will make a difference.

I would like to share the 5 types of EA/TEF, Esophageal Atresia/Tracheoesophageal Fistula:


Type A (7.7% of cases): Esophageal atresia in which both segments of the esophagus end in blind pouches. Neither segment is attached to the trachea.

Type B (0.8%): Esophageal atresia with tracheoesophageal fistula in which the upper segment of the esophagus forms a fistula to the trachea. The lower segment of the esophagus ends in a blind pouch. This condition is very rare.

Type C (86.5%): Esophageal atresia with tracheoesophageal fistula, in which the upper segment of the esophagus ends in a blind pouch (EA) and the lower segment of the esophagus is attached to the trachea (TEF).

Type D (0.7%): Esophageal atresia with tracheoesophageal fistula, in which both segments of the esophagus are attached to the trachea. This is the rarest form of EA/TEF.

Type E (also called Type H) (4.2%): Tracheoesophageal fistula in which there is no esophageal atresia because the esophagus is continuous to the stomach. Fistula is present between the esophagus and the trachea.

Below are diagrams of the five different types of EA/TEF.

TYPE	DESCRIPTION	DIAGRAM
Type A Esophageal Atresia (7.7%)	Both segments of the esophagus end in blind pouches. Neither segment of esophagus is attached to the trachea.
Type B Esophageal Atresia with Upper Tracheoesophageal Fistula (0.8%)	The upper segment of the esophagus forms a fistula to the trachea (TEF). The lower segment of the esophagus ends in a blind pouch (EA). This is a very rare form of EA/TEF.
Type C Esophageal Atresia with Lower Tracheoesophageal Fistula (86.5%)	The upper segment of the esophagus ends in a blind pouch (EA). The lower segment of the esophagus is attached to the trachea (TEF). This is the most common type of EA/TEF.
Type D Esophageal Atresia with Upper and Lower Tracheoesophageal Fistula (0.7%)	Both segments of the esophagus are attached to the trachea. This is the rarest form of EA/TEF.
Type E (also called Type H) Tracheoesophageal Fistula (4.2%)	There is no esophageal atresia as the esophagus is continuous to the stomach. However, fistula is present between the esophagus and the trachea.