It’s hard to watch your child get sick. And when your child is diagnosed with a chronic medical condition, it can be even more difficult.
Every year, more than 40,000 babies in the US are born with a congenital heart defect (CHD). While it’s the most common birth defect, and nearly 1 in 100 babies are born with CHD, the diagnosis can make a family feel isolated.
Fortunately, non-profit organizations like Mended Little Hearts are there to make heart parents feel less alone, and more prepared for what’s ahead.
Jodi Lemacks, National Program Director of Mended Little Hearts, explains how the organization helps families of children with CHD:
Q: What is Mended Little Hearts?
Jodi: Mended Little Hearts is a part of an organization called Mended Hearts.
It’s a peer-to-peer support organization for families of children with CHD. We try to provide that peer-to-peer support at all levels, from pre-birth to adulthood, by people who really understand what it’s like to have a family member with CHD.
When a child is diagnosed, it can feel like the whole world has come to a crashing halt. It’s normal for families to be confused, and feel isolated. The biggest thing we do is help connect people so they don’t feel alone, and they have others to walk them through everything.
Q: How did the program get started?
Jodi: It started because of a personal experience. When I was 20 weeks’ pregnant with my third son, we found out he was going to have a severe heart defect. Without intervention, it would be 100% fatal.
My family was very healthy, with no history of heart disease. So we felt like we were thrust into this world so quickly. We looked everywhere for answers and support. But that was back in 2003, when the Internet wasn’t quite as developed, and we couldn’t find anything about support groups.
I called up an existing program called Mended Hearts, but they weren’t really focused on young kids.
And then a few years later, they called me and said, “We remember you called when your son was diagnosed and you wanted to have a support group. We’re looking to start a kids group. Do you want to do this?” So I did. I started as a volunteer, and was eventually brought on as a full-time staff member.
Q: How does the peer-to-peer support work?
Jodi: We have more than 80 chapters across the US and Mexico, so we encourage families to connect with a local group. There, they can attend events and meetings, or get paired up to talk with other families in the area.
Families can also connect to others online. We offer a peer-to-peer parent matching service to connect parents with each other. There are also a couple of closed Facebook pages where parents can ask questions and talk to other parents.
The most important thing is to get people connected so their journey is easier. Even if it’s just asking simple questions, like “What should I pack for the hospital?”
Q: Mended Little Hearts offers other services besides peer-to-peer matching. What are some of those services?
Jodi: It’s so important for families to be educated about their child’s condition, so we provide educational resources. We have webinars and an annual symposium, and our website has a digital guide that’s free to download.
We also focus on community education—we work with CHD professionals within communities to teach people about CHD at group meetings, workshops, health fairs, etc.
Another big part of our program is working directly with hospitals and healthcare professionals to provide resources and support to families.
Q: What are some of the programs you work on with the hospitals?
Jodi: The bravery bags and bravery chests are really popular.
Bravery bags are bags that families get when their child is at the hospital, or has been just diagnosed. It happens more often than you would think—a child is born, the physician realizes there is a heart defect, and the child is immediately sent for surgery, often in another city.
Parents are caught unaware. And even if they were made aware ahead of time, they still find themselves unprepared for what’s ahead. So we give them bravery bags—because it’s not just the kid who has to be brave, it’s the whole family.
The bags have comfort items—toiletries, cards, sudoku games, anything to help them get through a hospital stay. But it’s not just about what’s in the bag. It’s knowing they have someone there for them, who understands what they’re going through.
Q: How many bags have you given out?
Jodi: Last year, we gave out over 5,000 bags. It’s been great to help that many families feel less alone, and more connected to people, even if they don’t know them.
Q: What are the bravery chests?
Jodi: We noticed that many physicians’ offices had nothing in the waiting room for the kids. Kids have to go through so much testing, and see so many doctors, and we realized, “These kids deserve a toy when they’re going through this experience.”
That’s why we created bravery chests, which are chests with toys in doctors’ waiting rooms. Kids get to keep their toy when they leave.
Q: Mended Little Hearts also does advocacy and awareness projects. What’s your favorite one you have worked on?
Jodi: I really loved the “Rock Your Scar” contest, which is now in its fourth year. Kids are sometimes embarrassed about their surgery scars, so this contest encourages them to be proud. And it’s not just the physical scars—CHD can scar someone emotionally, and this contest is about not being ashamed of those scars, either.
For the contest, anyone who has had CHD—kids or adults—can submit a picture “rocking” their scar. People do all sorts of fun themes or costumes. We have judges who choose a winner based on creativity—someone who goes the extra mile with their theme. We also have a people’s choice winner, so everyone can vote online.
The winners get little prizes, like gift cards. But it’s not about those prizes. The point of the contest is to see other people who are doing well with their scars, to look at older kids and teenagers, and see how far they’ve come. It helps them feel better about themselves.
One of our winners was a 13-year-old from Puerto Rico. It was the first time she ever showed her scar. And she went on to write a book about her experience with CHD.
Q: Are there any smaller initiatives?
Jodi: Absolutely. The local chapters do lots of awareness activities. We’ve had groups put up billboards, get a bridge lit up in red and blue for CHD Awareness Week—all sorts of really cool things.
Q: How can someone start a chapter?
Jodi: If there’s no chapter in your area, you can email info@mendedlittlehearts.org and write that you’re interested in starting a chapter. You will need at least 10 members to start a chapter, with at least 7 having some of relationship to CHD—we need to be sure the chapter will keep going.
It’s great if you can connect with a hospital or medical practice in the area. It’s always good to work with medical professionals, and make sure that families are using the programs that Mended Little Hearts offers.
Learn more about Mended Little Hearts at https://mendedlittlehearts.org/. Is there a health non-profit you would like to see featured on the CareContent blog? Email us and let us know.
