My five-week-old daughter has a hard time breathing and swallowing after I nurse her and when she wakes up. Her doctor concluded that she may be suffering from laryngomalacia. He suggested that for my own peace of mind I should have her tested with some fiberoptic scope. Can you tell me more about this condition or point me toward additional information?

Hannah's Mom

Laryngomalacia translates as "soft larynx" (voice box). It is an unfortunate term, as there is nothing unusually "soft" about the larynx in laryngomalacia. It is fairly well ccepted that laryngomalacia is due to an immature nerve supply to the larynx. It is not due to any anatomic abnormality of the laryngeal tissues.
Infants with laryngomalacia inhale with a characteristic harsh, high-pitched noise that doctors call "stridor." Laryngomalacia is the most common cause of stridor in infants, but it is not the only cause. For example, vocal-cord paralysis and narrowing of the airway immediately below the vocal cords are two other conditions that are associated with stridor. These conditions can be differentiated only by visual examination of the larynx -- hence your doctor's suggestion that she be examined with a fiberoptic scope. This is a safe technique that provides extremely valuable diagnostic information.

Interestingly, you did not mention noisy breathing in your letter. Stridor during inhalation is usually the most dramatic feature of laryngomalacia. Other features are that the stridor is typically not present at birth but develops a few weeks later. The stridor varies with the child's position, such that it is worse when the child lays on her back.

Serious feeding and breathing difficulties are uncommon in laryngomalacia. It worries me that you mentioned breathing and feeding difficulties, but not stridor. This makes me wonder if she has some other problem with her airway or esophagus. Thus, the fiberoptic-scope exam (in my opinion) is not just necessary for your "peace of mind" but also essential to confirm a suspicious diagnosis.

If she does have laryngomalacia, her prognosis is very good. Most cases of laryngomalacia resolve without treatment by age two. Only children with severe breathing problems and/or difficulty feeding (such that they are not gaining weight) require surgery. Only 5-10 percent of children diagnosed with laryngomalacia fall into this category.

I suspect that your daughter's pediatrician wants to refer her to an ear, nose and throat specialist (ENT) for the fiberoptic exam. I would strongly recommend that you follow the pediatrician's advice and take her to an ENT. Many disorders associated with difficulty feeding and breathing do not improve with time (as laryngomalacia does) but may actually worsen. Also, if your daughter is aspirating (choking on food and saliva), she may be injuring her lungs. This can result in health consequences that can last a lifetime.