[JillianB72]

my grandaughter was just dx with tracheomalasia, apparently bad enough to need surgery. The children's hospital that she's in has never done the surgery before, and are unsure of what exactly they're doing...has any one taken care of an infant that has needed this surgery?

[janfrn]

What type of surgery are they planning for your granddaughter? There are a few different approaches, using stents, costal cartilage ring grafts and so on. I'd be concerned about letting anyone who didn't know exactly what they're doing operate on a family member's AIRWAY!! The surgery is very delicate and difficult. and if not done properly could result in tracheostomy and long-term mechanical ventilation. Can you obtain a second opinion and look for an expert ENT surgeon to take her to? I've cared for lots of kids with tracheo- or laryngomalacia; they can be challenging, especially if the surgery is botched. One little boy I remember had a slide tracheoplasty for congenital tracheal rings (different problem, but similar surgical approach) who went back to the OR numerous times, required semi-emergent transfer to another facility in another province and is now permanently trached because his initial surgery was not done properly. Airways are nothing to be fooled with!

[JillianB72]

That's just it...they're not sure what surgery they want to do. They want to call around and get more information. She's in Mott's childrens hospital in Ann Arbor, MI. On a vent in the PICU (she also has several heart defects that are complicating things.) They tell me it's very rare to have an infant that needs surgery to correct this.

[janfrn]

It's not all that rare. And kids with heart defects have a higher incidence of tracheomalacia (developmental biology... the abnormal parts are all developing at the same time in utero and something causes a glitch). You're right that it does complicate things though. The repairs can all be done at one time through the same sternotomy incision, but that requires cooperation between cardiovascular surgery and ENT, and anesthesia. And of course the requisite expertise in all areas has to be available. I don't know anything about Mott's other than what I've read on the Net. They seem to have a good reputation and a lot of specialty support, so she's probably in good hands. They'll all consult with each other to come up with the best approach. Keep the faith.