Montana mother spreads awareness about genetic heart defects


MISSOULA, Mont. - Amber Johnson, of Missoula, has three children and a full-time job, but still has to take time to manage two genetic heart defects.

Johnson wears a device that is both a pacemaker and an emergency defibrillator.

"I have experienced some fairly scary episodes where my heart wants to beat at lower than 30 beats per minute," said Johnson.

Johnson adds that she may not have lived much longer had she not been diagnosed with two electrical arrhythmia disorders while she was pregnant.

"I was diagnosed with both at 32 years old. I was eight months pregnant with my third child. So I lived my whole life with a few problems like fainting spells that were attributed to just growing and anemia," said Johnson.

Doctors diagnosed Johnson with Long QT syndrome and junctional bradycardia.

"There wasn't sufficient evidence or research to identify those in my childhood," said Johnson.

Johnson says fainting spells and a very slow heartbeat as a child were mistakenly attributed to anemia or growth spurts.

Because of her diagnosis doctors also have been able to identify Long QT syndrome in Johnson's daughter. Together, they try to spread awareness.

"(We want) others to be aware that there are these electrical arrhythmia disorders of the heart, which are really difficult to detect, until tragedy happens sometimes. We encourage others to get electrocardiograms as part of their regular physicals, to listen to their bodies and to be aware at all times and to be aware of their family history, as well," said Johnson. Stress may also have worsened Johnson's condition. She makes sure her family takes time for healthy eating, exercise and other positive activities.