My first child died soon after birth with the congenital form of Myotonic Dystrophy. What is this and will it happen again if I have another child?
This is the most severe form of Myotonic Dystrophy and often occurs when a parent (usually the mother) is only mildly affected. It is often fatal because the breathing muscles are poorly developed. Children who survive often have problems, though they may improve during childhood. The main problems for infants are breathing or swallowing difficulties. Older children will usually have a learning difficulty, but less problems with their muscles until they are adults. It could happen again and a further affected child would be likely to be severely affected. You are strongly advised to see your genetic counsellor about the risks of this and for advice about genetic testing.
