Heart patients receiving treatment in the Kansas City metro now have two additional support groups to turn to.
Two support groups with national backing and a focus on heart disease and heart defects are gathering strength at area hospitals. Mended Hearts is a national and community-based nonprofit organization that offers services to heart patients through programs, support group meetings and educational forums. Similarly, Mended Little Hearts serves children with heart disease and congenital heart defects as well as their families and caregivers.
Emily Falkenrath of Overland Park has been been leading the joint Mended Hearts and Mended Little Hearts. She became involved with heart disease awareness and support because her son Liam was born with pulmonary hypertension and atrial septal defect, a condition where blood moves between the left and right valves of the heart.
The Mended Hearts and Mended Little Hearts groups have both held two monthly meetings and are trying to gather members and input from local heart patients. Next the groups will form a board of directors and plan fundraisers and social events. Despite being brand new to the area, meetings have averaged about 15 families, which makes Falkenrath optimistic for their future.
“The great thing about us is that we’re so new we can be whatever we want to be,” she said.
Support groups are important for families with children receiving heart treatment because it provides them a place to find education about their children’s conditions and, more importantly, meet families going through a similar hard time, said Dee Smith, clinical social worker at the Children’s Mercy Heart Center.
“When a family finds out their child has a heart defect, they feel very isolated and feel they are the only ones going through this,” she said. “I find that parents that have met other parents of children with a heart defect are far less anxious.”
The Mended Hearts and Mended Little Hearts groups hope to do that and more for families, Falkenrath said. As more families contact the groups for support, Falkenrath polls them about what kind of services they should provide. Popular ideas include providing food and clothes for families who travel from outside the metro and are forced to stay for long periods of time, holding a holiday social event and fundraiser and doing a campaign during February, heart disease awareness month.
The groups meet together once a month.
Leslie Smith of Olathe attended a meeting last week as a way to support others. Smith’s daughter died shortly after birth after having heart surgery while still in the womb.
“I see this as a way to honor my baby,” she said.
Jacquie Landes of Independence, who has had congestive heart failure for the past eight years, would like to see the groups work with doctors in all metro hospitals to provide support inside and outside the hospitals. She would also like more care given to the spouses of older adults with heart conditions.
“They’re confused and scared and usually they’re too proud to ask for help,” she said.