No, we changed our name to Montana Brave Hearts in Spring 2023. As much as Kalee loved the original name because it honored her son, she felt that Evit may want his privacy as he got older. One event kept the original name, The Evit’s Hope Run in Colorado Springs.

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.

This is our most common question. It’s multifactorial; first, the screening process to get on the heart transplant list is lengthy–and not every child qualifies. There is currently a shortage of organ donations. Children can wait months, even years on a donor list. Young patients wait on average more than two and a half times longer than adults for an urgent heart transplant (see citation below). Currently, there are 1,900 children on the national transplant waiting list. More than 500 children waiting for a donor organ are between 1 and 5 years old (Donate Life America). Sometimes, children waiting don’t get a new heart in time. Heart transplantation is a chronic disease that needs to be managed. Children are continuously monitored for rejection and a transplanted heart only lasts on average 15 years.

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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%.

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