Advice for Pierre-Robin Syndrome

By Pam Marshalla

Q: Can you give our family advice about stimulating speech, language, and feeding in a 14-month old girl with Pierre-Robin Syndrome? She is making some sounds and is pretty smart. We have read your book Becoming Verbal with Childhood Apraxia and it has helped us understand about stimulating sound and word productions. Although she continues to be fed through a G-tube, she now is eating many different foods orally.

Let me just make some straightforward statements about how I would approach a toddler with Pierre-Robin Syndrome. I have seen a number of these children, and many others with similar issues.

Diagnosis

A child with Pierre-Robin Syndrome does not necessarily have apraxia. I cannot rule it out from the little I know about her. But the main issues are the small jaw and cleft lip/palate and their effect on speech and feeding. This is speech distortion due to structural anomaly. If she has neuromuscular disorder too, then this also will cause distortion of speech. If she has cognitive impairment too, then this will effect overall speech and language development, both expressive and receptive.

Speech-Language

Amy will take her own path of speech learning. She is only a toddler, so she has lots of time to develop. The greatest deterrent to S/L development is COGNITION, but it sounds like she’s pretty smart. Keep track of her cognitive skills, and gear her learning and speech activities accordingly. Design therapy activities to match her thinking, interest, and play skills.

Reward her for every sound and word she makes. Assume she is saying words, even if they are grossly mispronounced. Do not worry about sound perfection. She will not have the ability to make sounds perfectly for a long time. She may never make some sounds well. Do not limit your sound stimulation to only the sounds that are early to develop, or the ones she “should” have. Stimulate for ALL consonants and vowels. We never know which sounds individual children learn first, second, third, and so forth. She will blaze her own trail through the forest of phoneme acquisition.

The main goal of speech therapy for a client with a structural anomaly is to help her compensate for the bony and soft tissue differences. Teach her to make the best sounds she can, given her facial structure. If she also has dysarthria due to neuromuscular disorder, then the main goal is to aim for speech clarity. We do this through exaggeration and over-pronunciation of sounds and words. Teach her to punch-out sounds and words.

Oral-Motor

The greatest speech deterrent, of course, is the small jaw and cleft lip/palate. She also may have a tongue that is not fully formed, as well as oral-tactile sensitivity problems. No matter where she is in her surgery sequence, keep encouraging oral movement. Help her to move the mouth (jaw, lips, tongue) in many and varied ways. Ignore the people who claim that oral motor skills have nothing to do with speech. They do not know what they are talking about, frankly. Give her a wide variety of mouth experiences, from eating all kinds of foods, to chewing on baby chew toys, to eating pudding with her fingers or with NUK brushes, to watching her mouth in a mirror, to playing with her hands in her mouth. Teach her to brush her teeth as a stress-free activity. Be consistent in the ways in which you wipe her face clean, always stroking from side-to-side.

Feeding

She needs a feeding expert directing her feeding program. This can be an OT, PT, or SLP. I hope you have someone who has good training in this area, although it sounds like she is coming along in this area. Make feeding stress-free. Focus not only on the way she eats, but the atmosphere around mealtimes.

Get this book for the family or the clinicians: Morris, S. E., & Klein, M. D. (2000, 1983). Pre-feeding skills: A comprehensive resource for mealtime development. Austin: Pro-Ed. This is the “Bible” of feeding therapy.

6 thoughts on “Advice for Pierre-Robin Syndrome”

  1. This is most helpful. Thank you to Pam’s daughter for maintaining the wealth of information her late mother Pam Marshalla shared with so many of us SLPs. May she rest in peace.

  2. That was awesome information and advice. I’m studying to be an SLP, and I
    have a question concerning Pierre Robin Sequence. I have to find 4 peer re-
    viewed articles on types of treatments or assessments-Development of speech
    and language of 6-12 year old’s born with Pierre Robin Sequence. There are numerous
    info. about cleft lip treatment/therapies. My paper is due soon and I still can’t find
    much on it. Could you please give me some ideas where I should look for these
    kind of peer reviewed sources.

    Thank You
    valerie

      1. Valerie, Amelia, and all,
        I am also studying to be an SLP and I am in the same situation with finding limited evidence-based, peer-reviewed information on PRS for speech and language with children. I am too looking for articles on treatments and therapies for a paper due soon! Please share, Thank you so much!

    1. Valerie,

      Any chance you could pass along these articles? I am a CF am have a client with Pierre Robin Syndrome. Your help would be much appreciated!

      Lindsay Gilmore

  3. Hello. Do you any advice for a 35 years old person that was born with Pierre Robin and have problems in his day to day life making people understand him?, You can still understand but is a very nasal voice sometimes hard to understand.

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