13 Resources To Ease Caregiver Stress For Heart Kid Parents

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Sometimes, you don’t know where to turn for help with your heart kid. You’re inundated with procedures, forms to fill out, and mounting medical bills. And it can quickly become overwhelming.

To help ease the burden, I’ve assembled a toolkit of sorts that may prove helpful in your journey with your heart kiddo. 

Here’s a list of 13 resources that can help you manage your caregiver stress, and ease the emotional and financial burden of caring for your heart kid.

Clinical Information And Education

Understanding the millions of terms that come flying at you during your child’s treatment can be dizzying.

Here are a few sites that can help you sift through the noise and get a handle on your child’s conditions. These are great resources when you’re at home and your medical team is not nearby to answer any questions you might have.

1. American Heart Association

The American Heart Association has a great section dedicated to congenital heart defects. It goes in-depth about a variety of heart defects, diagnoses, and how parents can best prepare for any procedures and treatments.

There’s even a free support network you can join organized by CHD survivors and caregivers.

2. Congenital Heart Public Health Consortium

As a group of national, state, and local organizations, the Congenital Heart Public Health Consortium works on public policy as a way to improve the lives of those affected by CHD. And a key part of its mission is education.

The site provides fact sheets that address a ton of frequently asked questions caregivers may have for their kids with CHD and challenges that come with this care.

3. National Heart, Lung, and Blood Institute

If you really want to understand the science behind CHD, then visit the National Heart, Lung, and Blood Institute website. It covers everything from how the heart works to what it’s like to live with a congenital heart defect.

Caregiver Information

As a caregiver of a heart kiddo, you also need support yourself. These sites can provide much needed support in a variety of ways.

4. Midwest Heart Connection

The nonprofit organization Midwest Heart Connection serves up loads of encouragement and assistance to the CHD community.

They offer:

  • Care kits for your heart kiddo when she has a lengthy hospital stay, which includes activity books, hospital info, a Bummer bear, and other items
  • Family matching to connect you to other families in your area going through the diagnosis
  • Monthly support groups
  • An iOS app to manage your heart kid’s health data

5. Mended Little Hearts

Mended Little Hearts offers programs and services that help families connect with each other and members of the medical community. They feature group meetings, seminars, workshops, and health fairs.

6. The Children’s Heart Foundation

The Children’s Heart Foundation provides support through research. The organization is committed to research funding for CHD.

It offers many opportunities to participate in fundraising efforts and champion the cause. Plus, it features a monthly email newsletter that highlights research updates and upcoming events.


Ways To Celebrate Your Heart Kid

Of course, I can’t leave out some resources to uplift the heart kiddos themselves. Here are some wonderful ways to celebrate your heart kid in fun and encouraging ways.

7. Heart Heroes

As far as I’m concerned, every heart kid is a hero. But Heart Heroes takes it one step further. The organization creates one-of-a-kind superhero capes that celebrate each Heart Hero individually. They’re free, so make your cape request for your little superhero.

8. Zip-Line

Unfortunately, kids who have heart surgery have a scar left behind, which can be pretty difficult to deal with, especially as time goes on. Luckily, there’s Zip-Line to help with this.

It’s a wonderful children’s book that explains what the scar is and how to look at it as a symbol of bravery for heart kids. And believe me, they earned it.

9. Beads of Courage

Beads of Courage is an organization that also addresses strength and courage. In many cultures, beads represent accomplishment and have been used as protection for warriors.

This organization uses beads to encourage children with serious illnesses that require long courses of treatment to share their stories of bravery and survival. And as they move through treatment milestones, they gain a bead.

Ask if your heart kid is eligible to participate here at Children’s.

Also read: Sharing the love this Feb! How Beads of Courage will Help Heart Families

Financial Assistance

The costs associated with care of your heart kid can become quite a financial burden. But these organizations can help provide financial assistance.

10. Children’s Organ Transplant Association (COTA)

The Children’s Organ Transplant Association, or COTA, helps coordinate medical fundraising for transplant kiddos. At Children’s, we give all of our transplant patients and their families information about the organization and its services.

11. Hopeful Hearts Foundation

The Hopeful Hearts Foundation can provide financial assistance and deliver care packages to hospitals.

12. HelpHOPELive

For heart kids in need of a heart transplant, HelpHOPELive helps with the cost of transplants. The organization also covers unmet medical expenses by helping families in need with fundraising campaigns, providing all the tools to make the campaign a success.

13. UNOS Transplant Living

This is another great resource to help with transplantation costs. It offers a list of organizations that can help provide financial assistance you may need.

Also read: 4 Resources To Help Cover The Costs Of Heart Transplant Medications

Armed with these tools, hopefully you’ll be better able to navigate your heart kid’s journey with more emotional and financial strength.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

4 Responses to "13 Resources To Ease Caregiver Stress For Heart Kid Parents"

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  1. Alicia

    November 19, 2015 at 9:36 pm

    We didn’t realize till after everything settled how important these organizations were to us. Always leaving little gifts and encouragements! We were too reserved to ask for help but they always made sure we were taken care of!

    • Barb Roessner

      November 20, 2015 at 12:37 pm

      Hi, Alicia! I’m so glad to hear that you have benefitted from these organizations. It’s nice to hear that even if you find asking for help difficult, these organizations are still there to support you. Thanks for commenting!

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