Participants Needed: Preparing for your doctor’s appointment

The Pediatric Congenital Heart Association is collaborating with an IT developer working on patient empowerment through different internet applications.

We are currently seeking 10 parents interested in helping us try something new to help parents and caregivers prepare for upcoming pediatrician or cardiology visits.

Interested people must:

    1. Have at least minimal comfort level with social networking, i.e. Facebook.
    2. Have a scheduled appointment with-in the next three months for either the pediatrician or cardiologist.
    3. Be willing to try something new and provide feedback to help us improve the process.

If you are interested, please complete our Registration Form.   Once you have completed the form, you will be contacted in 1-2 weeks regarding your participation.

Thanks,

Amy

We are here… CHD Support

PCHA recently had the privilege of attending the Mended Little Hearts Leadership Training Dinner. The following message was read by National Program Director Jodi Lemacks:

Why Mended Little Hearts Is Here

We are here because after a diagnosis, in your darkest hours, when you have pain in the pit of your stomach and you feel like your heart may break open, there is immeasurable power in having someone take your hand, either virtually or in person, and say, “Hey, you don’t have to walk this journey alone. I will be right here by your side.” And for the first time since you heard those horrible words about your beautiful child’s heart, you have a glimmer of hope, and you think just maybe you can do this.

We are here because when you are sitting in the hospital day after day, hoping that your child survives, and you get a care bag (or our new Bravery Bag) full of items that are perfect for helping you through your hospital stay, you understand that others have walked this path and care about you. You feel comforted, and again, you know you are not alone. You realize that although we can’t give you what you really need, a healthy child without a heart defect, we can give you things to make life just a little easier for you and your family.

We are here because once your child has gone through the initial surgery, heart procedure or hospital stay, you get home and think, “Now what?” You feel scared and confused and have more questions than answers. You wonder if you are doing anything right and if your child is going to be okay. What if you make a mistake? You find that having someone, or even a whole group of people, who continue to support you, to answer questions, to provide information and to connect you with the resources you need gives you confidence and courage so you are better able to care for your child.

We are here because the answer, “Really, I didn’t know that,” to the question, “Did you know that congenital heart defects are the most common birth defect in the U.S.” is simply unacceptable—especially when there is still not a cure for congenital heart defects and our kids need one. We know that many of the answers we do have for our kids—the surgeries and procedures—are temporary, and we live our lives hoping and praying that the technology and/or treatment will come before our kids need them. We know the importance of raising awareness in our communities and nationally. We advocated on issues that affect our kids. And we make a difference—even if it is sometimes just one person at a time. Because we are here, you have confidence that we will keep raising awareness until the there is a cure.

We are here in honor and memory of all of the beautiful children and adults who have lost their battle to congenital heart disease. We work for better quality and new treatment options to say, “This disease will not take any more of our children! We have had enough!” We are game changers who won’t stop until CHD is no more.”

Mostly though, we are here because helping others not only helps them, but it helps us as well. When we are able to take a painful experience and use what we learned to give back to others, we heal. We show the world clearly that although our child has congenital heart disease, it did not defeat us, and it cannot define us. We are stronger than we knew, and our service to others makes the world a better place.

Personally, I am very grateful Mended Little Hearts is here for us when we need it. Thank you all for your time, dedication and service. You all help to improve the lives of families throughout the nation, and while you may not hear from the families you serve often enough, know that what you do makes a difference.

For more information, online support or to find a local group near you, visit mendedlittlehearts.org

Mended Little Hearts is a program of the Mended Hearts Inc., a non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951.The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.