Providing Support for children, youth, and families affected by Congenital Heart Disease

Congenital heart disease is the number one birth defect and killer of children in the Nation. Those who survive have to endure several heart surgeries, which are physical grueling and psychologically draining. 2Hearts! offers emotional support, education and secrets to surviving America’s most common incurable and deadly disease

2HEARTS aims to ensure that all teens with Congenital Heart Disease have the resources needed to lead stable, healthy lives. 2HEARTS provides a support network for children with Congenital Heart Disease. They get to meet others who have experienced similar pains and fears. They have a network of other kids who have scars and pacemakers and daily medicines; other kids who can understand what it feels like to spend weeks in a hospital, or not be able to participate in P.E., or wait years on the heart transplant list.

2HEARTS is also putting together workshops for teens and their parents. As these kids transition to adulthood they need to learn how to take responsibility of their own healthcare and become independent adults. 2HEARTS will provide them with the information they need to keep themselves as healthy and happy as possible.

2HEARTS! will make that possible by raising awareness and teaching the community how to insert those achievements into your child’s life.

Founding Story

My name is Jamie Gulick and I am one of the Co-Founders of 2HEARTS.

Heather and I met a couple of years ago while we were volunteering for another agency. We had an instant connection and we shared all the challenges and the joy of growing up and living with CHD. Although we have tremendously different stories, we both shared many of the challenges of being a teen with CHD. We realized how little resources there are out there for teens with CHD. Teens who are trying to find themselves and learn how to thrive despite living with a heart defect.

We all know that being a teenager can be tough. I am sure all of us have some painful and probably embarrassing memories from our teen years. In addition to all the normal teenage insecurities and emotions, these teens have to worry about ongoing Doctor appointments and tests, how to make up all their homework they missed while they were stuck in a hospital bed for a week, what to say when people ask about their scars, the fears of upcoming surgeries and the fear of their often unknown future. It is a lot to handle. Especially when you are 12.

A 12 year old should be playing outside, not stuck in a hospital bed or at home; a 12 year old should be discovering the activities they enjoy – joining sports teams, dancing, art classes – not being too tired to see their friends or participate in school activities, and a 12 year old should be worrying about their math homework, not worrying about the results from their last doctor appointment.

For children and teenagers with congenital heart disease, this is their reality. I know both from my own personal experience and from getting to know our teens through 2Hearts. 2HEARTS is here to make them feel supported and not alone. And to teach them the skills they need as they grow up and take responsibility for themselves and their own healthcare.

Parents, doctors and surgeons have spent countless hours and resources on how to extend the quantity of these kids life. Now they need to be given the skills so they can go out and conquer the world and experience all the amazing things life has to offer.