The Medical Consumer's Advocate

Reasons for speech delay in a child with Down Syndrome

Q: My son is 10 years old and has Down’s syndrome. He has always been severely speech delayed. When he was younger, he had constant reoccurring ear infections and had the tubes placed into his ears, and he also had his adenoids removed. The doctors are now recommending he have his tonsils removed. They are very large and may be a possible reason for the speech problem due to a shortened cleff. He also has had a sleep pattern most of his life of sitting up while sleeping and hanging his head back, which I assume was for more of an air passage. They have tested for hearing loss and he seems OK as long as there is no fluid in the middle ear. My hopes for this procedure is for my son to have more audible speech, and the ability to breath better through the nose and throat with out having to hyperextend his neck. I am on a very limited income and don't have the resources to seek a second opinion, so I am seeking some advice and wondering if my hopes are too high for this kind of result?

 

A: If your son has huge tonsils, they may be affecting the SOUND of his speech (his ability to enunciate clearly) but they are certainly not contributing to his speech delay. Hearing loss can contribute to speech delay; it sounds like his hearing is fine, however. If he has not been seen by a speech therapist, he needs to be evaluated. Contact his school (or, if he is not yet in school, contact the school district where he will be enrolled) since speech therapy services are usually provided free through the school system.

Large tonsils can affect the sound of speech in two ways. Your child may have a muffled voice (as if he is trying to talk with food in his mouth.) Alternatively, your child may have what is called a "hypernasal" voice ("too much nose" in his voice). To explain this, I need to describe the anatomy of the back of the oral cavity (mouth.)

The roof of the mouth is composed of the hard palate in front, and the soft palate in the back. The tonsils are near the back of the oral cavity; the soft palate "splits" on each side, to sandwich each tonsil. When you produce certain sounds during speech, the soft palate moves so as to touch the back of the throat. This seals off the nasal cavity (which is above) from the oral cavity. Large tonsils can prevent the soft palate from reaching the back of the throat. As a result, air escapes from the nasal cavity at inappropriate times, such as when the individual makes "p" sounds. This is known as hypernasal speech. The palate is not really too short; it is merely blocked (by the tonsils) from reaching the back of the throat.

A speech therapist could give you valuable insight into the nature of your son’s speech problems, by being able to identify muffled or hypernasal speech. A speech therapist would NOT be the best person to comment on your son’s breathing problems at night; this question belongs to your son’s ear, nose and throat doctor.

Does your son snore? If his neck is not hyperextended during sleep, does he ever stop breathing? This is called "obstruction," and it has a very characteristic pattern. The child snores, then there is a period of time where he makes little or no noise at all, and then the child makes loud gasping or snorting noises as he struggles to "catch his breath."

Your son’s doctors probably interpret his neck hyperextension as his attempt to position his airway so that he has the least difficulty breathing. If he has big tonsils, this may indeed be the reason for his hyperextension. On the other hand, many children with Down’s syndrome have tongues that are too large for their mouths. (Usually, when this problem is carefully examined, it is discovered that the child’s tongue is normal-sized, but his/her lower jaw is too small.) If this is your son’s problem, then a tonsillectomy may not significantly improve his airway. If your son has BOTH problems (large tonsils and a tongue that is too big for his mouth), then a tonsillectomy may help the problem, but may not completely correct it.

While a careful physical examination can be helpful in detecting whether your son has one or both problems, the best method of examination is a sleep study combined with fiberoptic examination of his airway. A sleep study is an examination in which your son will be monitored (during sleep) for his rate of breathing, heart rate, brain waves, the level of oxygen in his blood, and many other things. While he is sleeping, the doctor will pass a slender, flexible telescope down his nostril, to the back of his throat. The doctor will be able to see exactly what is blocking your son’s airway during sleep– his tonsils, his tongue, or perhaps both. The sleep study will also determine the severity of his sleep breathing difficulties; his doctor would then know for certain whether an operation is really necessary.

This is, unfortunately, an expensive test, and it is not widely available. Nevertheless, since your son is disabled, he should be eligible for state assistance. This should cover his medical bills, including a sleep study.

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