You would never be able to tell, just by looking at Eryn that she suffers with a life threatening birth defect. On the outside and on a good day, Eryn looks like a happy and healthy child. Sadly, she has suffered with life threatening medical problems right from the start.
At birth, Eryn’s esophagus did not connect to her stomach, but was connected to her lungs. So, on the second day of her life she had surgery just so she could eventually be fed by mouth and be able to breathe without getting food into her lungs. Since then, she has had several surgeries, many invasive and non-invasive procedures, lots of doctor’s appointments, and a plethora of medications in an effort to correct her birth defect.
Yet, she still suffers with multiple bouts of chronic aspiration pneumonia and GERD. As a mother, this has been a very heart breaking experience. I just feel so helpless. Babies born with EA/TEF often have an array of other medical conditions. Unfortunately, Eryn is no different. She, too, has 11 other conditions and these have caused a great deal of wear and tear on her little body.
Eryn has had pneumonia more than 10 times in her short little life, and multiple respiratory infections. Her long term outlook seems very grim without finding a medical solution to her problems. She is susceptible to lung scarring which leads to the thickening and stiffening of the lung tissue and often times Chronic Obstructive Pulmonary Disease (COPD). To control her illness, Eryn has been on multiple courses of antibiotics, steroids, and inhaled medications which also damage her body. In addition, due to her Gastric Pull-Up, the procedure to connect her esophagus to her stomach, she has severe GERD because part of her stomach is above her diaphragm, which also dims her future because it leads to Esophagitis and sadly, Esophageal Cancer.
So, as you can imagine, we are constantly on our way to or from the doctor’s office or hospital. Our little daughter is constantly going on a particular medication or coming off of one. There is only so much her little body can take. This way of life simply cannot be sustained. It just can’t go on forever.
Eryn clearly needs more specialized medical help than she has received thus far. She needs cutting edge medical intervention. Cincinnati Children’s Hospital has a reputation for treating children with even the most complex esophageal disorders. We believe Cincinnati Children’s Hospital Medical Center is where she can get the help that she so desperately needs.
Therefore we are have a Walk-A-Thon for Eryn on Sunday, July 29, 2012 that will help Eryn get to Cincinnati Children’s Hospital, as well as help with EA/TEF research. Please consider walking with us and/or sponsoring this very important event. To register, go to http://www.shadenaturals.com/baby-sisters-song-walk-a-thon/. Your support is very much appreciated.
