Little Hearts, Inc.: An Organization of Hope

In 1996, my son was born with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). He has had three open-heart surgeries and today is doing very well. However, when he was a baby, it was important for me to find other families who had a child with the same heart defect; I needed to see how the older kids with HLHS were doing. We were told this was a rare heart defect, and at the time, this meant that there were only a few survivors. We were given the number that 1 out of 8,000 babies were born with HLHS, but I still felt alone. Within a few weeks, I found nine other kids with HLHS, ranging in age from 12 months of age to 10 years old. We met at a restaurant in Massachusetts and I took the kids' group photo, which I called the Picture of Hope this is something that has been continued at Little Hearts throughout the years. My needs were met that day after meeting these families and kids, and I learned that these fellow heart parents loved getting together and looked forward to meeting again. I'm a believer in things happening for a reason, and since a support network was needed for us heart parents, I started Little Hearts in 1998. Our initial membership included families with kids with HLHS just from the New England states; however, today our membership is over 1,400 children of all different heart defects, of all ages, from all over the United States. Our mission is to offer support to families affected by congenital (and acquired) heart defects through our support services, and to promote public awareness to this #1 birth defect. Our support services consist of parent matching, recommended CHD resources, an annual picnic, email support groups, projects and activities, a quarterly newsletter, picnic slideshow of kids from our annual picnics, and stories of children with all different types of heart defects. When a parent sends in a membership form, they can pick and choose which services they're interested in. If all they want is to have their contact information released to other parents for our parent matching program, then that's all they'll sign up for. Some members choose everything, either because that was their need at the time or they weren't sure what they were really looking for. Whatever services they check off, we mail them a welcome letter shortly after receiving their membership form. Our Web site alone offers hope to many families worldwide. The pages that receive the majority of the hits are our Picnic/Photos and Stories pages. On our Picnic/Photos page, we have hundreds of photos of heart kids who have attended our annual picnics over the years. Underneath their photo is their diagnosis and the year they were born. Seeing photos of older heart kids gives so much hope to the families who have just learned that their unborn baby or newly diagnosed infant baby has a heart defect. Our Stories page lists stories not by the name of the child but by their diagnosis, which makes it easier for a new heart parent to find a story about another child with the same diagnosis as theirs. Not only does our Stories page give hope to families, it also gives our members a chance to share their story. Every parent has a story to tell about how their child's heart defect affected and changed their lives. For many, it is healing to share it. In fact, Little Hearts receives emails from parents asking to contact a particular member after reading their child's story. For some with rare types of heart defects, it's a great way to meet other families. For example, we don't have many members with a child who has experienced ventricular tachycardia who share their story, so when we have a member who does, it helps many others online. A big hit and favorite to many of our members is our annual picnic. This year our annual picnic will be Sunday, June 3rd, and once again members will travel from all over to attend. Each year, the number of those attending grows as many new members join us for the first time, while many members bring along their extended family to share a day of celebration and hope with them. We use the same outing facility yearly, which provides outdoor activities such as canoeing, paddle boating, basketball, tennis courts and playscapes for the younger kids. We also provide clowns, moonwalks, and piñatas. This year we're having the older heart kids videotape and interview the younger heart kids in the hopes that it will bring them together and make it easier for them to meet one another. Meeting new people can be uncomfortable for some, so we hope this makes it easier for the kids to meet other kids like themselves. We'll share the footage online on our Picnic/Photos page as well. Our most recent milestone has been moving the Little Hearts office out of my home and into a professional office space here in Cromwell in 2005. We are very thankful to the many Cromwell residents who come in and volunteer their time to help us out, and to the many who have supported us over the years. What is our advice to other heart parents? When your baby is diagnosed with a heart defect, don't be shy ask as many questions as you have. Write down your questions before the appointment to help you remember each one, and write down answers as you go. You'll be given a lot of information and it can be overwhelming, so don't rely on remembering everything. If you have any doubts, get a second opinion. If you're not sure of what questions to ask or need to talk with another parent, feel free to phone our toll-free number at 866-435-HOPE, or email us at INFO@littlehearts.org. To learn more about the different types of heart defects, please visit the CHD Facts page of our website. CHD is the #1 birth defect; it affects 1 out of 40,000 babies born annually nationwide, according to the March of Dimes. If you'd like to help us with our mission in helping other parents, we have two suggestions. If you don't see our brochure in your child's hospital or pediatric cardiologist's office, contact us so we can get out a supply to them. Another way to help us is by making a tax deductible donation. Donations can be made online on our secure Web site at www.littlehearts.org or mailed to us at Little Hearts, Inc., 110 Court Street, Suite 3A, Cromwell, CT 06416.