The charity supports research for “life-changing” breathing mask

Nine-year-old Leo has been under the care of Sheffield Children’s Hospital all his life, after he had an infection when he was just eight weeks old. Leo’s brain was starved of oxygen, and he was placed into a medically induced coma; at the time, the doctors were unsure if he would survive.

Thankfully, Leo did survive but was left with profound and multiple disabilities. His diagnosis includes quadriplegic spastic cerebral palsy, global development delay, cerebral visual impairment, severe obstructive sleep apnoea, and epilepsy. To manage these conditions, Leo is under several teams at Sheffield Children’s, including the sleep and respiratory teams.

The family struggled with Leo’s nighttime routine for a long time, as he struggled to maintain his airways and breathing when lying down. As he is non-verbal and immobile, Leo couldn’t communicate if there were any problems, so his family had to pay very close attention to him throughout the night.

Mum, Lucy, said: “I was holding him up in bed every night while we were waiting to be seen, as I could hear him not breathing properly. It got to the point where I just needed someone to do something because I wasn’t getting any sleep to support him.”

In 2023, the Sleep Service at Sheffield Children’s undertook a sleep study with Leo, and he was diagnosed with severe obstructive sleep apnoea. In this initial study, they found that his breathing stopped 81 times an hour throughout the night, and his oxygen was down to 74%. Most worryingly, Leo had become so used to it that he wasn’t waking up when his airway became obstructed.

As a result of the study, Leo got his tonsils and adenoids removed and was given a mask to provide airway support during the night.

These masks are known as non-invasive ventilation (NIV) masks, meaning they deliver breathing support via a facemask for people whose natural breathing is ineffective.

Leo was supplied with the standard mask available for patients like him, a mask designed and made for adults. The mask kept his airway open and eased his sleep, but came with its own set of problems.

Leo is prone to seizures, and the design of the mask meant that if he had one in the night, it wouldn’t move with him and would easily become dislodged. As they are designed for adults, the masks are also ill-fitting for children and young people, meaning they caused pressure sores around Leo’s face, up his ears, and at the back of his neck, and creams and dressings needed to be applied constantly.

Then in March 2023, Leo was invited to take part in a research study being conducted by respiratory colleagues at Sheffield Children’s NHS Foundation Trust in partnership with Design Futures at Sheffield Hallam University.

The research team, led by Sheffield Children’s sleep specialist Professor Heather Elphick, have developed a NIV mask that is bespoke to each child. They found that a one-size fits all approach didn’t allow for the individual needs of each patient, so by using 3D printing, they could produce masks to the specific shape of each child’s face.

Their initial project was funded by the NIHR, the National Institute for Health and Care Research, but when working with the children’s parents, they found that they also needed better headgear, the straps used to keep the masks in place.

The long-term use of supportive ventilation can improve both quality of life and life expectancy for patients, so to support the research team’s vital work, The Children’s Hospital Charity funded the development of custom-made headgear to be used with the masks.

After proving the success of the prototype in adult volunteers, the team were able to begin working with children like Leo.

When Leo’s family were offered the chance to take part in the research project, they jumped at the chance.

Mum, Lucy, said: “It’s been amazing, the difference is night and day. His quality of life, his sleep, his comfort, all of it, amazing.

“Not only does the mask fit his face so much better, but the mask goes on with magnets and clips, and this means the pressure is being held away from him. There are just no skin problems anymore, and because it’s held in a good position, if he has a seizure in the night, it's much less likely to become dislodged. He’s getting much better sleep now, too.”

After over three years of affected sleep for the whole family, being part of this study has been transformative for them.

Inspired by Leo’s care, Lucy has even gone on to write her undergraduate dissertation on the importance of sleep for children.

Lucy said, “Sleep is like the beginning and end of health. It’s the most important thing for a child’s development, and if we can improve that, it can be life-changing. I think it would be absolutely fantastic for other families to receive the individualised care we’ve received as part of this project. With Leo, I have experienced that the masks and headgear improve a child’s sleep quality, which is better for their health outcomes all around.”

Learn more about The Children’s Hospital Charity’s research commitment here.

Support projects like this by donating here.