I am so sorry to hear about your daughter. My son (now 5) has been through years of diagnostics, heart surgery, emergency lung surgery, multiple hospitalizations, etc in search of answers. Finally we found out his ultimate and residual diagnosis - tracheamalacia and bronchomalacia from an arterial compression.

There are so many reasons that she could have tracheamalacia occurring so far down near her bronchi. It is critical that you find a doctor who specializes in this particular area. It falls under a confusing mix of ENT and Pulmonary specialties. We ended up going to Cincinnati Children's Hospital, and treated by a multidisciplinary team of ENT/Pulmonary/cardiology doctors. In his first visit, they definitively diagnosed his condition and he has now been under the care of the 'Aerodigestive Pulmonary' department (he does not have any digestive issues and never has been) but that's where the doctors are best suited to do flex bronchoscopies and scoping to monitor his condition. He was initially diagnosed with tracheamalacia and told would grow out of it. We were told that by our pulmonologist in Austin, and it was not correct.

If your daughter is suffering from tracheamalacia, it is always possible that there are additional complications. Even if that's her only diagnosis, its critical to determine its cause, degree, treatment and long-term prognosis.

I do not know what part of the country you are in, but would highly recommend ENT and pulmonary pediatric specialists who are willing to work in a team capacity. Once her condition and cause is determined, you'd be able to find the best physician to care for her in the longer-term. There are several hospitals across the U.S. who have specialists to help with your specific situation. I would recommend Cincinnnati Children's, but realize that isn't possible for everyone to get to. There are a number of hospitals in the NorthEast that have brilliant specialists in these areas.

My uncle is the director of a major pediatric hospital, and was pivotal in helping us find the right doctors.

I hope this helps, even slightly. I will be thinking of you and your daughter. If you want to, you're welcome to post additional information or contact me with more specifics.

There is a great online yahoo group (of moms) with children suffering from tracheamalacia and bronchomalacia and have, by necessity, become varying degrees of specialists themselves - through all of their years of experience in the doctors' and hospital systems. They also have a Facebook page. Contact me if you'd like to be directed to their groups.

I wish you all the best. Your daughter is lucky to have such a dedicated and loving advocate. Good luck with your efforts.