Shane Burke
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Hi, my name is Shane. I was born on Jan 21, 2000 at 4lbs 17in long and with a Tracheal Esophageal Fistula and a Esophageal Astracia. I lived in the NICU for the first 4 months of life on and off a vent. They had also diagnosed me with GERD, so they did a nissen on me. When I came home on May 22, 2000, I was there only a short time before I had to go back to get my esophagus dilated. I ended up on 02 again and stayed in the hospital till I was 6 months old. This is when I got my Trach. It was a very scary night for mommy and daddy because the trach the doctor put in me was a neonatal so it occluded into the pouch that the TEF repair site leaves. All the sudden I stopped breathing and the couldn't figure out why so they put me into a medically induced coma, put an ET tube down my throat and rushed me to the OR, where they figured out the problem. they put a PED trach in and woke me 7 days later and I was doing a lot better. Since then I have had 2 Tracheal reconstruction's with Rib grafts. The first one worked and that section of my airway is sufficient enough but the other section that they couldn't see because of the severity of stenosis in the first section was so sever they can't seem to get open. My doctor sent me, mommy and daddy to see Dr. Cotton in Ohio. Every one claims he is the best, I guess we'll have to see. We went there this past September and him and a team of other doctors ran a series of test on me. They also did a lot of scopes and feeding test. They told mommy that I have to stop eating by mouth for a month prior to going back out there and then they may perform a Tracheal Resection on me as long as all of my test come back ok at that point. The Pulminologist in Ohio diagnosed me with Bronchiectasis also. It is really different out there compared to the hospital I use here. I guess that's because it's a Children's Hospital. Well here's my short version of my story, if any one out there has ever had a resection surgery done maybe they could email us and give us there view because everything we read sounds a little scary.
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Update November 2005: Shane was successfully decannulated on October 19, 2005, at Children's of Montifiore in the Bronx. Dr Perich performed a tracheal resection and two weeks later he was home and back to doing everything he enjoys. He still has tracheomalacia which causes him to have a stridor at times but otherwise he is doing great. He will have another bronch performed in January 2006 and I will send another update then.
Email: Dena Burke
