Home Sleep Service for Cardiac Patients with Down Syndrome
In 2021, thanks to the kindness of our supporters, the Foundation was able to fund a project developing a home sleep service for children with Down Syndrome. Sleep disordered breathing (SDB) is one of the most common conditions of childhood. Over 70% of infants and children with Down Syndrome will develop SDB. This project has and will continue to help prevent the significant negative consequences of undiagnosed sleep disordered breathing whilst also empowering and supporting parents so that both they and their infant/child have a good night’s sleep, which has immense positive benefits for all.
“We received funding for a set of home sleep study equipment. This allows us to measure a child’s oxygen saturations, their heart rate, the carbon dioxide measurement through the skin, their airflow, their work of breathing by placing respiratory bands on their chest and tummy and they are videoed so that we have audio and visual feedback on what is happening during sleep.
We have chosen children with Down Syndrome on our waiting list for sleep studies to make use of these new devices. They are given a set slot on a Friday to have this study performed in their home.
The respiratory physiologist invites the parents to attend a face-to-face teaching session on the equipment on a doll. The parent then sets their child up at home themselves. They are given laminated handouts with step-by-step instructions on how to apply the equipment. The night physiologist phones them between 9-11pm to check that the equipment is working. Having this dedicated set of equipment is allowing us to access these children in a timelier fashion and having the study done at home captures a more natural sleep and is the preference of parents too. It
also removes the pressure on in-patient beds.
Sheila Javadpour
Consultant in Paediatric Respiratory Medicine
Children’s Health Ireland at Crumlin