In some cases, families are never given a diagnosis for their child. BCH is a nonprogressive neuromuscular disorder that does not worsen but tends to improve with time and intervention. The cause of BCH is unknown and there is no cure. There is no genetic testing available for BCH at this time. It is difficult for the child to maintain head control or a sitting position.
Parents handle their infants with hypotonia gingerly as they develop head control quite late.
They feel fragile and limp like rag dolls and are unable to bear weight on their legs. The child with BCH may slide out or fall over in a high chair. Positioning of the infant for feeding is a particular challenge for parents as the child lacks head and chest control and exhibits low tone in the face and mouth. Sucking, chewing and swallowing are difficult for these infants and toddlers. Drooling food and saliva from the mouth is common and may persist in the school age child.