Diagnosis Congenital myotonic dystrophy

If a couple are concerned their baby may be affected, it is possible to have tests during a pregnancy.

Your GP can refer you to your local clinical genetics department for more information and testing. Please see our Genetic counselling and family planning factsheets for more information.

What are your risks during pregnancy?

During her pregnancy, the mother of a child with congenital myotonic dystrophy may notice that the baby is not moving around in the womb as much as might be expected. She may have polyhydramnios (excessive amounts of amniotic fluid) and go into premature labour.

The mother may not be aware of having myotonic dystrophy herself until after the birth of her baby. If she does know she has myotonic dystrophy, staff should be made aware during the pregnancy and at the time of delivery, that the baby may need immediate intensive care. This may mean that the baby will need to be resuscitated or taken away for extra help with their breathing. The parents should also be made aware of these procedures. Please see our Genetic counselling and family planning factsheets for more information.