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This is the most severe form and despite the interventions offered is always fatal. Some mothers may notice reduced fetal movement during the last trimester, but most children appear normal at birth before loss of movement in their limbs is noticed. Most symptoms appear before six months of age, though the earlier Spinal Muscular Atrophy Association of Australia is diagnosed the more severe the situation and the prognosis for the child. Key features include:
Type 1 children risk breathing in (aspirating) milk, formula or saliva into their lungs, hence they are at significant risk of respiratory infection and pneumonia. Poor head control may present a risk of blocking the airway, therefore handling, cuddling and transporting a small child with such little head control can be dangerous for them. Laying the child on a firm angled pillow and providing regular turning massage and chest physio will assist the removal of saliva, assist feeding and provide necessary comfort through touch. Feeding by a nasogastric tube (through the nose) or through a PEG (Percutoneous Endoscopic Gastrostomy placement) in the stomach may be required. Spinal Muscular Atrophy Association of Australia type 1 children will never sit, and rarely live beyond more than 2 years of age.
Children with type 1 Spinal Muscular Atrophy Association of Australia and their carers face a difficult battle for survival. At constant risk of respiratory infection and pneumonia, and issues with feeding, constipation, airway maintenance and ensuring healthy bodily function presents real emotional, physical and financial challenges for parents.
Toys suitable for type 1 children