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Information on Baby Sister's Song
Baby Sister’s Song, Inc. is a 501(c)3 non-profit organization dedicated to bringing awareness to Esophageal Atresia with or without a Tracheoesophageal Fistula (EA/TEF); to support individuals who struggle with it; and to fund research into the cause, treatment, and cure of it.
Baby Sister’s Song, Inc. was established because of Baby Sister’s parents’ unsuccessful struggle to locate and secure information and resources to address her rare birth defect, Esophageal Atresia with a Tracheoesophageal Fistula (EA/TEF).
Esophageal Atresia (EA) is a congenital birth defect where the esophagus does NOT develop correctly. The esophagus, the tube that carries food from the mouth to the stomach, ends in a blind pouch or it narrows into a thin cord and does not provide a continuous passage to the stomach. It affects approximately 1 in every 4,000 live births, and the cause is unknown.
Tracheoesophageal Fistula (TEF) may or may not accompany Esophageal Atresia. However, it too is a congenital birth defect where there is an abnormal connection between the esophagus and the trachea (windpipe). The danger with TEF is that it is often complicated because of aspirating food material into the lungs; which causes pneumonia, choking, and sometimes death.
Our goal is to heighten awareness about Esophageal Atresia with or without a Tracheoesophageal Fistula, find medical answers, and to raise funds to support EA/TEF Children with getting the specialized medical care they so desperately need.
EA/TEF children look great on the outside, but their medical problems are vast and affect many of their internal organs. Baby Sister, like other EA/TEF children, has suffered from life -threatening medical problems right from the beginning. The simple task of eating or drinking can be a life-threatening event.
Unfortunately, EA/TEF
Children have multiple surgeries; many invasive and non-invasive procedures; lots of hospital stays and medical appointments; and take massive amounts of medications to try to correct their medical problems. Also, these children often have a lot of other medical conditions, and they endured a great deal of trauma to their little bodies.
While this birth defect is rare, it should not be overlooked. According to the 2013 Maryland Vital Statistics Annual Report, Maryland had 71,806 live births, of which, based on the frequency of this birth defect, approximately 18 children would have EA/TEF.
Every child deserves a happy and healthy life, and we are searching to find ways to make that a reality for all EA/TEF Kids, and to make more resources available. We believe that one way to make that happen is to bring awareness to this medical condition.
- See more at http://www.babysisterssong.org/#sthash.Xl8nvtdS.dpuf
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