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Empowering Families Through Support and Education

Mended Little Hearts. Empowering Families Through Support and Education. Your baby has a congenital heart defect. Each year in the U.S., about 40,000 families will hear these words:. Common Reactions. Grief Fear Anger Confusion Guilt

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Empowering Families Through Support and Education

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  1. Mended Little Hearts Empowering Families Through Support and Education

  2. Your baby has a congenital heart defect. Each year in the U.S., about 40,000 families will hear these words:

  3. Common Reactions • Grief • Fear • Anger • Confusion • Guilt • Loneliness--wanting to connect with others who have “been there”

  4. Mended Little Hearts Is There • National program whose mission is to empower families affected by congenital heart disease • Began in 2004 with 2 groups—now has 86 groups in 30 states & DC • Community-based & volunteer-led • Works with hospitals and medical professionals to provide services for families that compliment medical care

  5. Hope, Help, Healing • Peer-to-peer support • Families can connect with others who truly understand because they have similar experiences • Members share experiences to help them find answers to non-medical questions and learn to live with CHD • The Accredited Visiting Program supports families with kids in the hospital

  6. Hope, Help, Healing • Education • Coming soon—the digital Little HeartGuide Parent Resource • Webinars on topics families need • Emails with tools and tips for families • Educational programs in our communities to give families needed information

  7. Hope, Help, Healing • Connection with resources • Local groups connect families with needed resources in their area • National website contains resources to help families care for a child with congenital heart disease throughout his or her lifetime

  8. Hope, Help, Healing • Bravery Bag Program • Bravery Bags are given to families in the hospital • Bravery Bags contain toiletry & comfort items along with educational materials • Families know they are not alone

  9. Hope, Help, Healing • Awareness • National and local CHD Awareness Activities • Rock Your Scar Campaign to empower kids and adults with CHD • Roar ‘N Run Virtual Charity Race • Local group activities

  10. Hope, Help, Healing • Advocacy • Advisors about Family-Centered Care • Promote CHD Research Funding • Promote CHD Surveillance • Support Pulse Oximetry Screening • Support CPR in Schools • Speak on issues that impact our families

  11. THANK YOU!

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