Mended Little Hearts of Boston is continuously looking for resources to help our Congenital Heart Defect families along their journey. Below are some sites we have found to be helpful:
Mended Little Hearts National:
Provide families and caregivers of children with CHD’s an outlet in which they can find answers, education, resources and peer-to-peer support.
The Children’s Heart Foundation:
CHF has a parental resource book called “It’s my Heart,” that provides information on CHDs in layman’s terms.
Cove Point Foundation for Congenital Heart Disease
Many families are looking for information about CHD in general or about their child’s specific defect(s). MLH members find the site has easy-to-use information and diagrams of several different heart defects. It has descriptions, diagrams and definitions to help users understand CHD. There is information in Spanish as well.
American Heart Association:
The American Heart Association is the nation’s oldest, largest voluntary organization devoted to fighting cardiovascular diseases and stroke.
There is also helpful information on the American Heart Association website. At the bottom of the page, you will see that AHA has a web booklet called, “If Your Child Has a Congenital Heart Defect.” MLH members helped with the editing of that booklet so that it is easy for parents and caregivers to use. The booklet has descriptions, diagrams, and general information about the heart and some procedures. AHA also has a web booklet on adults with congenital heart defects that you may find helpful. Learn more about CHD, by reading AHA’s 2011 Statistical Fact Sheet, as well as Small Hearts – Big Challenges: Congenital Heart Defects in Children and Youth.
Boston Children’s Hospital:
Here you can find information on doctors, visiting the hospital, and other hospital related information that may help you prepare for your visit.
The Boston Children’s Hospital Heart Center also has its own wonderful site with a lot of useful information:
Housing resources information through the hospital can be found here:
Ethan M. Lindberg Foundation:
The Ethan M. Lindberg Foundation advocates for unique and collaborative approaches to medical and patient care that make a difference for children and families facing congenital heart disease.
Pediatric Congenital Heart Association:
Founded on the key purpose to be the resounding voice of the pediatric patient population. PCHA works passionately through collaboration in advocacy, education and research to reduce the impact of congenital heart disease while striving to realize a world free from it.
Icing Smiles, Inc.:
Icing Smiles is a non-profit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child.
Sisters By Heart:
Sisters by Heart is a group of heart moms, who reach out and support parents of children diagnosed with Hypoplastic Left Heart Syndrome (HLHS).
The Heterotaxy Connection:
Offer support and up to date resources for families affected by Heterotaxy.
Medication Adherence Text Message Program:
The medication adherence text message program is designed to help remind patients and caregivers of the importance of compliance to a medication and encourage them to take their medications as prescribed. The text program is free of charge.
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. CaringBridge is powered by generous donors. CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love, hope and compassion in the guestbook.
CarePages websites are free patient blogs that connect friends and family during a health challenge.