What to Expect: Healthcare for SMA Patients
Caring for an infant with spinal muscular atrophy (SMA) will be overseen by many different healthcare professionals who will work together to create a detailed care plan for the patient. Initially, the family may be referred to a pediatric neuromuscular clinic and then representatives from other medical fields will be introduced.
According to TogetherinSMA, the care of an SMA patient will consist of both comprehensive care and palliative care. Comprehensive care covers the acute medical needs of the child along with the day-to-day needs, including airway clearance, cough-assist procedures, management of secretions, non-invasive and invasive ventilation requirements, nutrition, and hydration.
Palliative care is concerned with improving the quality of life for the infant and providing relief which may include limiting interventions, making the infant as comfortable as possible, potentially administering life-sustaining measures, and offering practical and emotional support to the family.
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