Trust Your Gut

shutterstock_414254503.jpgIn every SLP’s career, there will be students who stand out in your mind for one reason or another. Some are success stories, some are students you just click with, and some help you grow as a therapist.  Megan falls into the latter category for me. Even though I had her on my caseload nearly 20 years ago, the lessons I learned from working with her remain fresh in my mind.

Megan was a kindergartener in our young life skills class.  She was a cutie:  long golden hair, bright blue eyes, engaging smile.  But Megan had some issues, too.  Learning disabilities were evident in delayed academic milestones.  Megan was overweight;  not obese, but definitely chubby.  As a result, or perhaps this was the cause, she was not fond of physical activity, although she did enjoy the weekly “dance party” with our PT.  By far, her greatest challenge was speech.  Megan’s speech was severely disordered, consisting mostly of nasalized vowels and a few consonants.  Her parents had taken her to several doctors from infancy through age 4 due to difficulty nursing, then delayed and disordered speech development, even traveling out of state to a pediatric specialist who declared that she likely had her own unique syndrome (he called it “Megan’s syndrome”) and told her parents she would “always sound like Tarzan!”  Yes, he really said that.  Parents were devastated.  I was incensed when I read that in her preschool records.

To enable Megan to communicate more effectively, we used a variety of communication boards and then a speech-generating device.  She learned to use these in daily routines, but it was evident that she wanted to be, first and foremost, a verbal communicator.  And that’s what I wanted for her, too, in part, I’ll admit, because I wanted to prove that horrible doctor wrong.  In weekly individual therapy sessions, we worked on consonants following the developmental progression.  Megan had good imitation skills, but her nasality affected production so that cognate pairs were often indistinguishable.  I also noted nasal snorting on /s,z/ and in her laugh. An oral motor exam didn’t reveal anything unusual — certainly not the submucous cleft that I initially suspected.

To build up oral pressure and air flow, I used (with parent permission) a swimmer’s nose clip as we worked on repetitive sounds.  Repetition with the clip produced better sounds, but when the clip was removed, production quickly reverted to nasality.  As low tone was evident throughout her system, we added squeezing stress balls and standing.  These efforts yielded some improvement in drill, but there was little carryover when the nose clip and stress balls were removed.

One day I read a journal article about velo-cardio-facial syndrome.  As I read through the list of possible characteristics, I realized that Megan fit a whole bunch of them:  almond-shaped eyes, short stature, dysmorphic body shape, tapered fingers, a heart condition, learning disabilities, and nasalized speech.  Of course, I could not make this diagnosis, but my gut told me that this needed to be explored.

When I met with Megan’s parents, I told them of the progress Megan was making under controlled drills but that I really felt there was an underlying physical problem that was impeding her progress without the supports.  My recommendation was a visit to a cleft palate clinic.  Her parents agreed and made the appointment at a facility nearly 2 hours away.  As the day approached, Megan’s mom asked if I would accompany them to the appointment, as I could better explain what I had observed and would better understand what the team reported.

During the long drive to the clinic, I found myself having strange, conflicting thoughts. On one hand, I didn’t want anything to be wrong with Megan;  on the other, I was afraid the team would look at her and then at me like I had lost my mind in making the referral.  Long story short, the members of the team (SLP, orthodontist, ENT) each examined Megan and immediately agreed that she had come to the right place.  Whew.  Tests showed insufficient tissue and mobility in her palate.  A series of orthodontic interventions were recommended to spread Megan’s palate.  She would also undergo pharyngeal flap surgery.  Follow-up with a geneticist was recommended.

With this medical intervention and continued speech therapy, Megan became a verbal communicator.  Although it wasn’t easy, I’m so glad I trusted my gut.  The fact that we proved that doctor wrong was just icing on the cake!

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