Tuberous Sclerosis and Your Baby

Tuberous sclerosis causes growths in the brain, eyes, heart, kidney, skin or lungs. These growths are usually benign (not cancer). The first signs may be seizures and spots on the skin. Some people who have tuberous sclerosis may have learning problems or seizures that are hard to control.

Tuberous sclerosis isn't common, but it isn't rare either. Up to 40,000 people in the United States have it. The disorder occurs in both sexes and in people of all races and ethnic groups.

About half of the time, tuberous sclerosis is passed from a parent to a child, or inherited. If one parent has tuberous sclerosis, every child born to that parent has a 50% chance of inheriting it.

However, in about half the children who have tuberous sclerosis, the mother and father have no signs of it. It seems that sometimes a normal gene changes (mutates) to the abnormal form that causes tuberous sclerosis.

Doctors have no test to identify a person who has the tuberous sclerosis gene if that person has no signs of it.

If parents who have one child with tuberous sclerosis want to have another child, they should talk with their family doctor. The family doctor can refer them to a genetic counselor or medical geneticist who can help them decide what to do.

Your doctor may suspect tuberous sclerosis if your baby has a condition called cardiac rhabdomyomas (benign heart tumors) at birth or starts to have seizures, especially a kind of seizure called infantile spasms.

However, your doctor may not be able to tell that your child has tuberous sclerosis until these signs show up:

Unfortunately, there is no cure for tuberous sclerosis, but your doctor can treat many of the symptoms. For example, medication can help control seizures and surgery can remove any growths. Most people with tuberous sclerosis have a normal life span.