Until recently, children like Elizabeth (pictured here), were given no hope of living normal lives, in fact, they were given very little chance of survival at all.
Elizabeth suffers from Spinal Muscular Atrophy, a genetically inherited neuromuscular condition. This condition causes progressive muscle weakness and within the first year of her life, Elizabeth received a tracheostomy to keep her airway open and was placed on a ventilator to help her breath.
Although Elizabeth spent most of her first year of life in hospital, she is now 7 years old and lives happily with her family at home. She is fully dependent on the ventilator to breathe and needs an assortment of equipment at home to keep her safe and to prevent the need for hospital admission.
Mechanically dependent children like Elizabeth are not as uncommon as you may think. In 1991 the first world survey of neuromuscular disorders (NMDs) was published revealing that 1:3500 of the population may be expected to have a disabling inherited neuromuscular disease manifesting in early childhood or later in life. Since 1991 diagnostics have greatly improved through genetic testing and more recent studies show an increase and are likening the prevalence of NMDs to Parkinson’s Disease (1-2:1000).
Not all NMD patients need or elect to go on mechanical ventilation. However, with the latest technology and scientific know-how, equipment is smaller, safer, more robust and user friendly, giving more patients access to what was previously only available in the ICU.
Though quite common in first world countries, sending mechanically assisted patients’ home is a relatively new concept in South Africa. In the private sector, Medical Schemes are fast realising that treating these patients at home is far less financially onerous than in the ICU. The public sector (State), however, has yet to establish a payment methodology for such homecare practice.
