Research funded by the Charity runs drop in session for families

Zac, 9, uses a sleep mask to help him breathe during the night. Zac has hydrocephalus and cerebral palsy, He is also blind, he is non mobile and nonverbal. Zac has obstructive and central nerve sleep apnea, and this is the reason he needs his mask.

Meet Zac!

Zac, 9, uses a sleep mask to help him breathe during the night. Zac has hydrocephalus and cerebral palsy, He is also blind, he is non mobile and nonverbal. Zac has obstructive and central nerve sleep apnea, and this is the reason he needs his mask.

He and his parents recently attended a drop-in session with a team researching new headgear for non-invasive ventilation masks.

Zac often tries to pull his mask away from his face so researcher Matt Willox demonstrated a potential option for straps that would mean the headgear could be adjusted and kept consistently to the same setting.

Zac’s mum Becky said: “I am blown away by this. What they’re doing seems amazing and if this was an option for Zac we’d love it! If there was an adjustment on the mask that could always be set to the same point, then my mum might be more comfortable having Zac for a sleepover and it would allow us to have time away sometimes.”

The drop-in session Zac’s family attended is the latest step in a research project funded by The Children’s Hospital Charity.

Previously the research team have developed special masks that are individually made for each patient. The new masks improve ventilation which in turn has been shown to improve both quality of life and life expectancy. They are also more comfortable and cause less sleep disturbance.

The Charity have funded the development of the headgear to hold the mask in place to allow the delivery of the ventilation needed by the children and young people who use them.

To look further into the development of this headgear, Matt and Lee Richardson from the research team visited families in the community and asked about the experience they currently have and their needs that could be addressed with better headgear. From this they then developed several prototypes tailored to the feedback they received.

These ranged from making it easier to get the headgear on around a child’s head, to limiting the need for lots of adjustments to the headgear.

Following these charity-funded sessions, the team hope to develop the prototypes further, and create a set of bespoke components that a clinician can choose from to best suit patients, rather than a one size fits all design. Thank you to Zac and everyone who takes part in research to improve care across Sheffield Children's. Thank you to everyone who donated to make this project a reality.

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