Airway Issues in EB
Airway issues were always thought to be associated in those with Junctional EB but the last few years it has become common in all forms of EB.
The BIGGEST indicator that there are airway issues is when a child makes a whistling noise when they breathe in. The term for that is Stridor. It indicates there is something blocking the airway.
A common occurrence in those with EB and have airway issues is swelling and scaring of the epiglottises and will have difficultly swallowing when they eat/drink. Over a period of time when the epiglottises is constantly in a swollen state, the skin will stick together and close off the airway causing the person to go into respiratory arrest.
While you can not predict if your child will have airway issues, it is important to become aware of the symptoms. Get your child a good Ear, Nose and Throat (ENT) doctor. They will let you know your options. One of them is having the airway scoped to check for scaring or swelling. If the swelling and scaring get so bad, the doctor may recommend placing a tracheotomy.
A tracheotomy is a surgical procedure on the neck to open a direct airway through an incision in the trachea (the windpipe). This will allow your child to breathe better. Sometimes tracheotomies are permanent, other can be removed at some point in the future. It really depends on your child and their type of EB.
I have been blessed that some EB families within the EB community have been willing to share their child's story regarding airway issues My hope (and theirs) that it will educate other families on what to look out for and hope their child's airway issues are caught before its too late. If your child has/had airway issues and you'd like to share their story, please email me and I'd be happy to post your story on here.