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Myotonic Dystrophy (DM)

Congenital-Onset DM1

Medical Management

Babies born with congenital-onset DM1 have the most complex medical challenges seen in DM. Although the prognosis for these children has improved, the disease still has profound consequences and can be life-threatening, especially in the early months.

Breathing difficulties

The muscles needed for breathing are very weak in congenital-onset DM1, and a baby born with this disorder is likely to need a ventilator for an uncertain period of time. The breathing muscles do generally become stronger over time.

Cognitive impairment

Cognitive impairment and even mental retardation are common in congenital-onset DM1, often requiring early intervention during the preschool years and special education later.

Feeding difficulties

Weakness in the muscles needed for sucking may impair the baby's ability to feed. If the weakness is interfering with nutrition and hydration, a tube can be inserted either down the nose into the stomach (nasogastric tube) or directly into the stomach from outside (gastrostomy tube) until the muscles become strong enough for the child to eat and drink by mouth.

Muscle abnormalities

Babies with congenital-onset DM1 are born "floppy," with weak muscles and poor muscle tone. The medical term for this is hypotonia.

Motor milestones, such as sitting, standing and walking, are likely to be delayed, but ultimately are achieved by most children.

Muscle weakness in the feet may cause them to be fixed in a downward-pointing, inward-turning position. This condition is known as clubfoot or talipes equinovarus. This condition may have to be treated by casting or surgery before a child can walk.

To learn more about congenital DM1, read:

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