Congenital heart defects have not received the same level of funding as other diseases with similar prevalence. Government funding agencies play a crucial role in supporting medical research, whoever CHD research has received very little funding comparatively. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. Only 69% of babies born with critical CHDs are expected to survive into adulthood. For those that have Hypoplastic Left Heart Syndrome, only 40% survive into adulthood.

Montana children (and children from many other rural states) are required to relocate to large, tertiary care centers for the management of complex heart surgery and to manage their heart conditions. Large tertiary centers have access to specialized medical equipment, technology and care teams. In addition, they have a multidisciplinary approach - these centers have teams of specialists to address all aspects of the child's care. There are no centers that specialize in pediatric heart surgery in Montana, Idaho, Wyoming or the Dakotas.

To see a list of the top centers, click here ⟶.

For those with a single ventricle heart defect, 3 palliative surgeries are required to make the heart function as a single pump (or ventricle - healthy hearts have 2 ventricles). The first surgery is called the Norwood operation. During the Norwood operation, the infant will have a small, temporary tube placed called a shunt that facilitates the flow of blood in the body. The shunt is monitored closely and can malfunction or restrict, affecting blood flow. Once the child is around 4-6 months, they have another surgery called the Glenn operation. The temporary shunt is removed and a more stable conduit is placed in the child's circulation. The time between the two surgeries is called interstage because infants need close monitoring to ensure that their shunt is facilitating blood flow appropriately and that the infant is growing strong enough to have the next staged surgery. Unfortunately, the mortality rate for Norwood operation is around 15-30%.

Learn more ⟶