- Tongue reduction surgery for macroglossia in BWS can reduce tongue sensation, potentially creating new therapeutic challenges.
- Early intervention should focus on lateral tongue and tongue tip movement to support feeding and future speech.
- Many children with BWS also present with reduced muscle tone affecting the jaw, cheeks, and lips; a comprehensive orofacial assessment is essential.
- The Feeding Therapy: A Sensory-Motor Approach course is the recommended starting point for clinicians new to working with this population.
- Follow up with the 3-Part Treatment Plan for OPT to address oral placement and speech goals.
Reader Question
From the Community
“A 6-month-old baby with Beckwith-Wiedemann Syndrome was referred to me. This syndrome is new to me, and I have had a hard time finding good information. I know that macroglossia is present in most children with BWS. This baby's tongue protrudes significantly. Most of what I have read says many require tongue reduction surgery. I am trying to figure out what to do for this child in terms of oral placement therapy (which is also newer to me). Would I need to wait until after the surgery (if done) has been completed? Do you have any suggestions?”
- Gabrielle
Therapist Answer
Answered by Lori L. Overland, MS, CCC-SLP, C/NDT, CLC, FOM
Hello Gabrielle, I have worked with a few children with BWS over the years. Unfortunately, surgery often creates as many problems as it solves. It does reduce the size of the tongue and improve a child's appearance; however, with the cut through muscles, I have observed notably reduced sensation in the tongue.
I do think both oral motor/feeding and oral placement/speech will help this child. Specifically, working on the lateral borders of the tongue (trying to get some lateral tongue and tongue tip movement) is a strong starting point. Moreover, many of these children have reduced muscle tone, and you will observe issues with the jaw, cheeks, lips, etc.
What are you observing in this child? Have you taken any of the TalkTools classes? Given the age of this child, you would want to take the 2-day Feeding Therapy: A Sensory-Motor Approach first. It will definitely help you evaluate this child's motor skills for safe, effective nutritive feeding, and help you plan a program. Then I would recommend taking A Three-Part Treatment Plan for Oral Placement Therapy. Hopefully, that will be a good start for you!
Good luck.
Clinical Considerations for BWS and Macroglossia
Beckwith-Wiedemann Syndrome (BWS) presents unique challenges for SLPs. In particular, macroglossia (the enlarged tongue characteristic of BWS) affects tongue mobility, feeding safety, oral resting posture, and ultimately speech development. While tongue reduction surgery is sometimes recommended, Lori's clinical experience highlights an important consideration: surgery can reduce tongue sensation, potentially introducing new challenges even as it addresses the structural concern.
For infants with BWS, early intervention focused on building functional tongue movement (particularly lateral borders and tongue tip) can support both feeding and future speech development. Therefore, a comprehensive evaluation using a sensory-motor framework helps identify the specific motor skills the infant needs to develop. For a deeper understanding of how Oral Placement Therapy builds jaw-lip-tongue skills systematically, see our OPT overview.