This Is How We Roll: Pediatric Case Studies
With a New View, a New Voice
Hannah is a happy 14-year-old young woman with the diagnosis of cerebral palsy. She was born prematurely and other diagnoses include cortical visual impairment, chronic lung disease, adrenal insufficiency, and type 2 diabetes. She has had her salivary glands removed and is now on Robinol, which is reducing her secretions and subsequent aspiration.
Hannah is on oxygen (requiring more at night) and also uses BiPAP during sleep. She has a low core temperature and heart rate. Circulation is reportedly poor, particularly in her legs. Hannah takes Cortisol for the adrenal insufficiency. She has not yet begun puberty and is small for her age.
Hannah was referred by her speech language pathologist, Sarah Shields, CCC-SLP, who specializes in augmentative communication. Hannah also works with Bert Lindholm, ATP, at Numotion’s Denver office. Our goal was to evaluate Hannah’s current positioning and determine her optimal access method for a speech-generating device.
Figure 1: While her overall positioning was all right, poor head positioning was holding Hannah back.
Head Positioning Challenge
Hannah has a Quickie Zippie IRIS manual tilt wheelchair with an Aspen Seating Orthosis (ASO) seating system.
Although she was outgrowing the system and needed growth modifications, she was positioned fairly well with the exception of her head (see figures 1 and 2). Her head tended to hang forward and to her right side. She was using a Stealth Products Comfort Plus head support at the time.
Hannah uses an ASO seating system to provide the intimate contact required to maintain the position of her pelvis and trunk, which otherwise tend to collapse in other seating systems. This orthotic seating may reduce the risk of future spinal asymmetries, as well.
The materials and cover used in this system also help with thermal regulation, which is important for Hannah, as she has difficulty regulating her body temperature.
Figure 2: Poor head positioning raised Hannah’s risk of aspirating.
Hannah may experience a growth spurt accompanying the onset of puberty. The seating system includes a three-year warranty so that if Hannah’s growth exceeds the growth capacity of the current ASO, a new one will be provided.
The current head position was problematic, to say the least. Hannah was unable to turn her gaze forward and so had little ability to visually regard her environment. Her head position was also not optimal for breathing or swallowing and increased her risk of aspiration. We were hoping to find an independent means of access to a speech-generating device for Hannah, and her ability to move and control her head was quite limited, preventing her from attempting to activate a switch by her head. Finally, her ability to socialize, interact and communicate were all limited by this head position.
Figure 3: A smile from Hannah proves the rehab team is definitely on the right track.
A Stealth Products i2i head, neck and shoulder positioning system was tried during the assessment as well as another Stealth Products system with occipital, suboccipital and lateral supports. Hannah preferred the second option, and her head was in much better position than in the Comfort Plus (see figures 3 and 4).
Her head was upright and her neck aligned. She had a much improved visual field, she could move her head from side to side, and breathing and swallowing were better. She also smiled for the first time during the entire evaluation!
The suboccipital pad cradles the back of the skull and helps to provide increased support and stability. When combined with an occipital pad, the suboccipital pad can limit neck hyperextension by providing support in both locations with the neck aligned. The right lateral support (see figures 3 and 5), in conjunction with the lateral sides of the suboccipital support, provided three-point contact to align her neck laterally to maintain Hannah in a midline position.
Figure 4: Hannah’s newly upright head position gives her a brand-new view.
Giving Hannah a New Voice
Once Hannah’s head was well supported, we explored a means for her to access the speech-generating device.
Hannah had used a switch mounted by her hand in the past with little success. She has inadequate motor control for direct access, and her vision is inadequate for eye gaze control.
Hannah was able to activate an AbleNet Spec switch mounted by the left cheek bone with good control. This was mounted on a swing-away assembly on the left side of the head support. This allows the switch to be moved out of position, as needed, and return to a consistent location. The precise location is determined by adjustments at two ball joints on the assembly.
Figure 5: Hannah is in a better position to operate her speech-generating device.
We chose single-switch access due to her impaired vision, as this works well with auditory scanning. Auditory scanning provides auditory cues as vocabulary choices are scanned on the device. For example, if Hannah wished to select “My name is Hannah,” the auditory cue might be “name.” By using a private speaker, Hannah is the only one who can hear these auditory cues, and only her actual selections are heard by those around her. An available option on the selected head support is an embedded speaker, which we had placed in the right lateral pad (see figure 5) and which was connected to the speech-generating device.
A Smile Says It All
Hannah reportedly sees best in the upper portion of her visual field. We recommended that the device be mounted midline and in this upper visual field. A REHAdapt mounting system was recommended for attachment of the speech-generating device to the manual wheelchair.
Hannah is doing very well using her new speech-generating device. It is fair to say that she would not have this independent control without proper positioning of her head within the seating system. Proper head positioning not only looks good, but provides alignment for vision, breathing, swallowing and even functional movement.
And the world gets to watch Hannah smile!
This article originally appeared in the August 2015 issue of Mobility Management.
Michelle is an occupational therapist with more than 25 years of experience and former Clinical Director of The Assistive Technology Clinics of The Children’s Hospital of Denver. She is a well-respected lecturer, both nationally and internationally, and has authored 6 book chapters and nearly 200 articles. She is the editor of Fundamentals in Assistive Technology, 4th ed. Michelle is on the teaching faculty of RESNA, is a member of the Clinician Task Force and is a Senior Disability Analyst of the ABDA.