Mended Little Hearts is a program of the Mended Hearts Inc., a non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951. The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.
To join Mended Little Hearts via the National Mended Little Hearts website, please click here: https://mendedhearts.org/join-us-today/
OUR CHAPTER STORY
Since February 2010, Mended Little Hearts of Greater Rochester and Upstate New York Chapters have partnered with Golisano Children’s Hospital and The Children’s Heart Center at the University of Rochester Medical Center (URMC) to support Congenital Heart Defect (CHD) families from all over upstate New York.
Our Chapter Founder, Jennifer Kowal, started the local chapter after her daughter Claire Elizabeth was born with CHD. Jennifer and her family wanted to find a way to provide support for other local heart families and founded Mended Little Hearts of Greater Rochester, NY.
Group Programs—Peer Support and Education
Nothing can replace in-person connections with others traveling on a similar journey. Please contact us if you would like to set up peer-to-peer support. One of our local accredited visitors can meet with you virtually or we can help to link you up with MLH National’s network of visitors and match you best with a family with a similar CHD.
Find a Group
Education Resources
Mended Little Hearts provides educational resources to give families and patients information they need to make important decisions and to care for their child in the hospital and at home. Key resources are:
- The Mended Little Heart Guide Digital Version (English and Spanish)
- Webinars
- Annual CHD Symposium
- Empowering Parents to Make Healthcare Choices
- Mended Little Hearts Discussion Groups
- Virtual Visits via My Heart Visit – 1- 888-HEART99 (1-888-432-7899 or www.myheartvisit.org/
Hospital Outreach
Mended Little Hearts works with hospitals and healthcare professionals to provide these programs to support families when they need it the most:
- Accredited Visiting Programs (currently via email, phone, text due to COVID restrictions)
- Bravery Bag Programs
CHD Awareness Initiatives
Most people are unaware that congenital heart defects (CHDs) are the most common birth defects in the United States. Mended Little Hearts has national and local CHD Awareness Initiatives so people have vital information and can get the support they need.
Health Education to Communities
Congenital heart disease professionals in the community provide helpful information at Mended Little Hearts group meetings, through workshops, seminars and at health fairs.
Online Connections
Mended Little Hearts volunteers support families and patients through Internet and phone outreach as well as by providing Web resources. Hospital stays and seclusion in the home can leave families and patients who have children with congenital heart disease feeling helpless and alone. These are ways to get support:
- Join Parent Matching
- Contact your local Mended Little Hearts group
- Follow us on social media
- Join closed Facebook pages
- MLH CHD Chat
- Mended Little Hearts Angels
Advocacy
Mended Little Hearts advocates on issues that help families with CHD, such as newborn screening, CPR in schools, research funding, and improved surveillance of CHD patients.