Parents' Experiences of Diagnosis and Care for their Infants who had SMA Type 1
With SMA Type 1 there is a wide range of severity. Some babies are very weak and some stronger. Because every baby is different, appropriate medical management for one is not always appropriate for another. Each family's wishes in terms of a care path may be different. A baby's medical team always involves parents in discussion and any decisions about what can be very complex care.
Shared since 2011, parents whose babies did not access drug treatment describe their personal experiences of hearing the diagnosis and providing care. Our thanks to them all.