Mended Little Hearts support group hold events for Congenital Heart Defect Awareness Week

Sue Guinn Legg • Feb 11, 2013 at 10:13 AM

Congenital Heart Defect Awareness Week kicked off Feb. 7 and will wrap up on Valentine’s Day.

To raise awareness that heart defects claim more lives than any childhood cancer and receive only a fraction of the funding for research, and to let new parents know there are many families like them ready to help, the local Mended Little Hearts support group is covering a lot of ground.

The group conducted “One in 100” balloon launches Saturday in Johnson City and Kingsport and on Sunday in Bristol.

The group’s parents and children released one white and 99 red balloons, which represents the 1 in 100 children born with heart defects, Saturday morning at Mountain View Baptist Church in Johnson City and Saturday afternoon at Kingsport’s Oak Hill Funeral Home. The Bristol release took place at Common Ground Church, across from Bristol Motor Speedway.

Mountain States Health Alliance brought its walk-through Mega Heart to the Johnson City launch. The church’s women’s ministry provided refreshments. Good crowds turned out at the events to add their support.

Agnes Rhodes, the group’s facilitator, said most families find out about their child’s prognosis soon after birth. They learn as they go and they have a lot to share with new parents.

“It’s good for parents to meet each other and share their knowledge. So the main thing we want to do is let new parents know there are other families like them to share their load,” Rhodes said.

For some children heart defects are not discovered until much later in childhood and others go undetected well into adulthood.

“By looking at children, you don’t know. You don’t see their heart defect,” she said.

To raise greater awareness, Mended Little Hearts obtained proclamations from governing boards of each of the Tri-Cities that set out the following facts about CHD and reasons awareness efforts are carried out nationally throughout February:

n Each year there are approximately 400,000 children born in the United States with one of more than 35 identified forms of congenital heart defects.

n In Tennessee, congenital heart defects are among the most common form of birth defects and are often fatal due to their seriousness, the lack of effective medical intervention options and the limited availability of infant donor hearts.

n The origins and symptoms of congenital heart defects are becoming more readily identifiable and the range of surgical options are expanding through research and field experiences.

n All caregivers should be able to recognize the warning signs of congenital heart defects so that treatment can be provided as early as possible.

The proclamations conclude with recognition of doctors and scientists who work to solve the medical mysteries of congenital heart defects and improve quality of life for children, for their families and for everyone.

Rhodes said her son had three phases of surgery soon after birth at University of Tennessee Medical Center in Knoxville and at Vanderbilt University Medical Center in Nashville.

He is now 12 years old and he will turn 13 on Friday. His heart is patched but not fully repaired and the family has been told there may be the need for a heart/lung transplant in his future.

“We take it a day at a time,” Rhodes said.

He suffers fatigue but he compensates. He takes piano. He’s a good artist. He loves to cook. And he goes to heart camp every year.

“The main thing we’re trying to do is raise as much awareness as we can and let people know they have support,” Rhodes said.

More information about the Mended Little Hearts can be obtained by calling Rhodes at 676-8352, on the Mended Little Hearts Johnson City Facebook page, and at mendedlittlehearts.org.

Recommended for You