Frequently Asked Questions (FAQ’S)

General Questions

Why should I become a Mended Little Hearts member?

Becoming a Mended Little Hearts member helps to continue to inspire hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope. Connecting families in crisis provides a realization that they are not alone. Together, they find answers, develop connections and build a sense of hope for the future.

Who can become a member of Mended Little Hearts?

Anyone interested in supporting the Mended Little Hearts program can join online at www.mendedlittlehearts.org. Members who join a Mended Little Hearts group are parents/caregivers/family members who are also interested in providing a caring network of support and resources for families of children with heart defects/heart disease. Mended Little Hearts groups encourage all parents/families of heart children to join the effort. We welcome children with any type of heart defect or heart disease and at any stage of that disease, whether healthy or requiring treatment.

What is the cost for a Mended Little Hearts membership?

There is no cost for becoming a member of Mended Little Hearts.

Where does Mended Little Hearts get its funding?

Mended Little Hearts receives funding from individual member donations and from Mended Hearts.

How can I join Mended Little Hearts?

You can become a Mended Little Hearts member several ways. You can join online at www.mendedlittlehearts.org. Click on “how to become a member”. You can join a group by searching the list of current groups at “Mended Little Hearts near you”. Look for a group in your area and contact the coordinator. You can contact the Mended Hearts National Office and request that an application be mailed to you from the MLH Program Manager. You can fill out the application located inside the Mended Little Hearts brochure and mail it to the National Office.

How do I find out more information about Mended Little Hearts?

General information about Mended Little Hearts can be found on the website www.mendedlittlehearts.org. For more specific information or questions send a request to mlh@mendedlittlehearts.org or contact the Mended Little Hearts Program Manager at 1-888-HEART99.

When was the first MLH group started?

The first MLH group in the U.S. was chartered on April 16, 2004 in Hollywood, Florida at Joe DiMaggio Children’s Hospital.

Is Mended Little Hearts a program of the American Heart Association?

No. Mended Little Hearts is a program of The Mended Hearts, Inc., a national nonprofit organization that has been offering the gift of hope to heart disease patients, their families and caregivers for more than 50 years. Recognized for its role in facilitating a positive patient-care experience, Mended Hearts partners with 460 hospitals and rehabilitation clinics offering services to heart patients through visiting programs, support group meetings, and educational forums. Our mission is to “inspire hope in heart disease patients and their families.”

Who is Mended Hearts?

Mended Hearts, Inc. is a national nonprofit organization affiliated with the American Heart Association that has been offering the gift of hope to heart disease patients, their families and caregivers for more than 50 years. Recognized for its role in facilitating a positive patient-care experience, Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums. Our mission is to “inspire hope in heart disease patients and their families.”

Because Mended Hearts is made up of the very kinds of people it serves—heart patients, their families, and others impacted by heart disease, its members draw on personal experience as they help others. Mended Hearts support groups help people understand that there can be a rich, rewarding life after heart disease. Members listen, share their experiences, learn from healthcare professionals and volunteer to talk to other heart patients about what they may face including lifestyle changes, depression, recovery, and treatment. Annually, Mended Hearts volunteers make 227,000 hospital visits to patients and 30,000 visits to family members and caregivers.

Mended Hearts hosts an annual leadership conference to train volunteers and provide networking opportunities. The national office also publishes a quarterly magazine, Heartbeat, to communicate valuable information, chapter news and inspirational stories. Learn more about our programs and how you can join Mended Hearts! Or find out how you can help.

CHDs in Children

What is a congenital heart defect?

Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

Is all heart disease in children congenital?

No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as “arrhythmias”.

Who is at risk to have a child with a congenital heart defect?

Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

How many people in the United States have a congenital heart defect?

About 650,000 to 1.3 million Americans have a congenital heart defect. Approximately 36,000 babies are born with a defect each year.

Why do congenital heart defects occur?

Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

How can I tell if my baby or child has a congenital heart defect?

Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

How serious is the problem?

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion.

Are things improving?

Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30 percent and today it is around 5 percent.

How well can people with congenital heart defects function?

Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.

What is the social/financial impact of congenital heart defects?

Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.

What is the impact of congenital heart disease on families?

The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.

Where can I get additional information?

You can get additional information from the American Heart Association. You can reach them by calling 1-800-AHA-USA1 or at www.americanheart.org/children.
**All CHDs in Children information provided from The American Heart Association Website.

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