Ashton's hero
How the HERO-NXT offered the additional support Ashton needed
Profile
Ashton is a 13-month-old boy with a diagnosis of Trisomy 21 (Down Syndrome), West Syndrome/Epileptic Infantile Spasms, cardiac defects, breathing difficulties and hearing loss. He has a Nasogastric Tube (NGT) for feeding and is currently on a modified diet.
He lives in Victoria with his parents and 2-year-old brother.
Step 1: Assess
The main family vehicle is a 2019 Nissan Qashqai, with ISOFIX low anchorages.
Ashton is currently using an Australian Standard car seat in the rearward facing position. His mother, Sandy, and OT, Lucy, are very concerned as this car seat is not adequately supporting Ashton’s posture.
During car travel Ashton has experienced choking episodes and breathing difficulties requiring Sandy to stop the car and release him from the car seat to manage his airway. Due to these challenges, Ashton is currently transported in the car only for essential trips.
Step 2: Plan
After detailed discussion with Sandy, Lucy investigates a range of options.
She identified that Ashton needs a car seat that:
- is rearward facing
- is suitable for his small size
- has recline and postural supports (lateral and head rest) so that he can sustain neck and head control to optimise his breathing.
Lucy and Sandy investigate a selection of Australian Standard and special purpose car seats. Firstly, they arrange a visit to a retail outlet to trial the two selected Australian Standard car seats. When in the store, Ashton seemed well positioned in these seats. However, when the preferred car seat was fitted into Sandy’s car, due to the seat angle and space available, it was not able to be reclined adequately. In addition, after being in the seat for a period of time, Ashton did not sustain his positioning, and slumped forward.
Lucy then reviews the range of special purpose car seats available on MACA’s national product register and selects the Hero NXT and Carrot 3000 to trial in the clinic.
During the trial, Lucy observes and documents that the Carrot 3000 was too large to support Ashton’s smaller frame, but the Hero NXT was the appropriate size and offered the additional postural supports that Ashton's needs. In addition, this car restraint fitted well into Sandy’s car and Ashton maintained his posture in this seat during the trial. Anne found the seat’s swivel base handy, too, for transferring Ashton in and out of the car.
Step 3: Implement
Lucy prescribes the Hero NXT for Ashton and obtains the written quote from the supplier. Lucy completes documentation in line with the NDIS reasonable and necessary requirements.
In addition, Lucy completes the Advice to Parent form. In the section about installation and use, Lucy documents that the selected car seat is installed using ISOFIX attachments and a foot prop. Lucy advises Sandy to take particular care when placing Ashton into the seat and shows her how to ensure the straps are firm and positioned correctly above his shoulders.
When the funding is received and the car seat is ready to be supplied, Sandy makes an appointment with the supplier to meet with the parents and herself. The supplier installs the car seat and provides Sandy and her husband with education about correct installation and use. Lucy educates them about safely positioning and transferring Ashton into the car seat.
To comply with the road rules in Victoria, Lucy completes a referral letter for Sandy so that she can obtain a medical certificate from Ashton’s doctor. The medical certificate, to be carried in the car, is required to legally use a special purpose car seat in Victoria.
Lucy also updates the review period on the Advice to Parent form to three months, to ensure that the car seat continues to meet Ashton’s needs.
Step 4: Review
At 3 months, Lucy and Sandy review how Ashton is going with his car seat to ensure that it is continuing to meet his and the family’s needs. Lucy sets a review period of a further 3 months to provide a check in. As Ashton grows, the postural supports in the car seat will need to be adjusted (such as the lateral supports and his head rest). Lucy can contact the supplier for specific advice readjusting the restraint when required.
