Oral Motor Myths of Down Syndrome

There is a really good article here (scroll down to The Oral Motor Myths of Down Syndrome; it's a PDF file, so I can't link directly to it here). It explains in excellent and logical detail the progression of events that likely leads to the tongue protrusion typically seen in Down syndrome, as well as the effects of this on speech development. In a nutshell, it's apparently a circular process: although all babies, including those with Ds, are born nose-breathers, due to low muscle tone, babies with Ds typically have a weak suck at birth. This leads to predictable feeding patterns, which results in fluid buildup in the middle ear, which results in chronic congestion and often respiratory illness, which leads to mouth-breathing and the relaxed and protruding tongue typically seen with Ds, which results in a high, narrow palate, which results in both feeding and speech problems. According to the article, much of this can be prevented by vigilant feeding practices from birth.

The article talks mostly about bottle feeding, but does also touch on breast feeding, and how positioning a baby correctly while feeding, either by bottle or breast, can prevent the fluid buildup in the middle ear which leads to all these other issues.

Except for a short time while he was in the NICU, Finn has been exclusively breast fed. I've always operated under the belief, or at least hope, that this was helping him to develop the oral-facial muscles necessary to facilitate speech development. However, at 20+ months old, and having been breast fed his whole life thus far, although he babbles plenty, he has no discernible words. This article made me look back and examine the progression of events for Finn:

• Due to major intestinal surgery at birth, he was not allowed to take any nutrition by mouth until he was more than a week old.
• Because of this, we had great difficulty establishing breast feeding (low muscle tone was probably a factor as well, although Finn has always had relatively good tone).
• Because of this, he was bottle-fed expressed breast milk for a while; because of his weak suck (due to possible low tone and certainly trauma from the major surgery he underwent, as well as oral aversions from being intubated), he was given a fast-flow nipple, which likely contributed to fluid buildup in the middle ear.
• Although we were able to get him off bottles and exclusively nursing in a relatively short time, we faced a lot of difficulty in this endeavor, and therefore probably did not use optimal positioning for feeding, thus also contributing to fluid build-up in the middle ear.
• Finn definitely became chronically congested; I remember very well the constant snorting sound he would make. He also suffered from chronic upper respiratory infections for many months during his first year.
• The congestion seemed to resolve almost immediately when he had tubes placed in his ears at 11 months old. However, by this time he was already a chronic mouth-breather and even now has the relaxed, protruding tongue, and the high, narrow palate (which I confirmed this morning by feeling for myself).

So. In a way, I am fascinated by all of this, and glad that we can clearly see what happened. But I also feel sad, because what's done is done, and how to undo it now? It makes me sad that this could have been prevented, at least to a degree, but I didn't have any idea at all.

I have no doubt that this is where a SLP comes into play. However, unfortunately, Finn has been deemed not qualified for ST at this time, because he's apparently "not cognitively ready" for it. I'm not at all happy about this, nor do I agree with it, but I also am not in a position to fight it right now. This summer, I will, though.

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In other news, for the last couple of days, Finn is no longer pulling to stand. Even when I put him in a standing position up against something, he balks. I don't know what to think about this. Trying not to worry too much.