Breathing problems may continue, and can be very severe and life-threatening, especially if the baby is premature. Once the neonatal period (28 days after birth) has passed, their breathing problems tend to improve.
Children with congenital myotonic dystrophy may have ‘floppy baby syndrome’, which means they have difficulty moving their arms, legs and head. For example, they may have little or no control of their neck muscles, meaning their head tends to flop forwards or backwards. This usually improves with age. It is important that they have physiotherapy from a very young age to help with breathing, and to encourage movement and strength.
The child may also have poor head control and, often, facial weakness. They may lack facial expression, simply because they may be unable to make the usual range of facial movements. This may improve with time. Parents, family, friends and care professionals, and later, teachers, should be made aware of this.
Older children with congenital myotonic dystrophy tend to have poor concentration and tire easily. Attending a therapeutic playgroup can often stimulate the child’s learning and development. The motor milestones (physical achievements, such as sitting unaided) and the intellectual milestones tend to be delayed in a child with congenital myotonic dystrophy. They may have difficulties with speech, particularly with clear pronunciation. Speech and language therapy can help.
Facial weakness may make it difficult for babies to suckle and feed but advice from a relevant health professional can help with this. Babies often have swallowing and therefore feeding difficulties. They may bring up their food, have bouts of colic (excessive crying) and need food supplements. A Haberman feeding teat can be helpful for some babies.
Others may need a feeding tube (nasogastric tube) or – at times of illness – a drip to help with feeding. Some children have a squint, and very occasionally children may have impaired vision. Children commonly have club feet (talipes), or twisted feet. This may be mild or severe and will improve with physiotherapy. The more severe form, however, will require corrective surgery. Physiotherapy, with passive stretching, is important to help with foot problems.In some cases, special shoes, walking aids and callipers may be needed. A few children with the condition may need to use a wheelchair.
Children sometimes take longer to control their bladder and bowels. Bladder control usually improves, however bowel problems – especially constipation – may persist, owing to problems with the muscle of the bowel wall.
Children with congenital myotonic dystrophy may have more trouble with other body functions than they do with their muscles. A symptom that may appear to be totally unrelated may in fact be connected to their condition. It is important that health professionals treating them are aware of the wide range of associated problems.
Will the condition improve?
The symptoms of the condition may improve during childhood, but are likely to deteriorate later in life.