Marla Wandrum
Message 1 of 1
My boyfriend's daughter was born with a tracheal-esophageal fistula and had a tracheostomy put in after the surgical repair to promote the healing process. She is now 4 years old and still has the tracheostomy. Her doctors have done numerous brochoscopes to try and remove the trach, but every time they remove it her windpipe collapses. They then told us that she has aqcuired trachea malasia and that she will probably grow out of this condition as she got older. But now that she is four years old we are begining to think that maybe it is time to have this condition repaired surgically. Our problem is that we can't find a surgeon to preform the surgery because it would involve removing cartilidge from her rib cage and placing it in her windpipe to help make it stronger so that it might not collapse. Are we the only ones in this situation? Is there anyone else out there who knows what we are going through? We would like to here from sombody who has had a child or who has a child with this same condition. Thank you.