Summer camp. The very words conjure up images of bonfires, canoeing, and making lifelong friends. But for children with Congenital Heart Disease (CHD), the traditional camp experience might not be an option. Yet, the desire for connection, for belonging, remains just as strong. Thankfully, there are incredible summer camps designed specifically for kids with CHD. These camps offer a unique space where campers can: Build Confidence and Independence CHD can sometimes limit a child’s participation in activities. Summer camp for CHD provides a safe space where they can push their boundaries and t ..read more

Jace, born in October 2021, arrived with a hefty challenge – Tetralogy of Fallot with Pulmonary Atresia and Double Outlet Right Ventricle, a mouthful for such a tiny fighter. At just 10 days old, he embarked on his first adventure: a complex heart repair at Columbia University Medical Center. Though the operation was a success, the journey home held its own hurdles. Low oxygen saturation levels meant nights bathed in the blue glow of monitors, the rhythmic beeps a constant companion. But, even amidst the wires and tubes, Jace’s spirit shone bright. The pandemic added another layer of diffi ..read more

Today, U.S. Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA), along with original cosponsors Representatives Tony Cardenas (D-CA), Buddy Carter (R-GA), María Elvira Salazar (R-FL), and Darren Soto (D-FL), introduced the Congenital Heart Futures Reauthorization Act of 2024 – a bipartisan bill that will authorize continued funding for congenital heart disease research and surveillance programs at the Centers for Disease Control and Prevention (CDC). History of the Congenital Heart Futures Act First passed into law in 2010, the bipartisan Congenital Heart Futures Act was gro ..read more

Chris was 15 years old when he decided that he wanted to be a firefighter. This was a bold move at the time, when most patients with his congenital heart condition — dextro-transposition of the great arteries, or d-TGA — were advised to avoid exercise and strenuous activity. But Chris was already pushing these boundaries as a dedicated athlete, and his doctor, Children’s Hospital Colorado Adult Congenital Heart Disease Director Joseph Kay, MD, supported him every step of the way. Chris’ desire to stay active has greatly improved his own quality of life, and it helps the d-TGA patients that co ..read more

In the realm of Congenital Heart Disease (CHD), a concerted effort is underway to enhance our understanding, treatment, and support systems for those affected. Two key entities, the Centers for Disease Control and Prevention (CDC) and the National Center on Birth Defects and Developmental Disabilities (NCCBD), play pivotal roles in steering the course of CHD research and advocacy. Earlier this month, members of Conquering CHD were invited to the CDC to discuss current CDC projects. Here is what members were updated on: CDC Milestones From 2012–2015, CDC conducted a project with Em ..read more

We have some fantastic news to share with all of you! After a hiatus, we are thrilled to announce the triumphant return of Conquering CHDs National Committees. These dedicated committees are the heart and soul of our organization, and they play a vital role in our mission to support those affected by congenital heart defects (CHDs). If you’re interested in getting involved with any of these committees, want to learn more, or wish to apply, please see our National Committee page for details. Here’s a quick overview of the committees making a comeback: Advocacy Committee: Advocacy is at the cor ..read more

Medical imaging plays an essential role in CHD care. However, for parents, the thought of their child undergoing medical imaging can be a source of stress and anxiety. It’s not uncommon for children to feel scared or uneasy about the process, making it difficult for them to sit still and cooperate with the medical team.  Tips and Tricks for Kids and Medical Imaging Here are some strategies you can use to help your child cope and sit still during medical imaging from other CHD parents. 1. Explain the process One of the most important things you can do is to explain the process to your chi ..read more

Dear friends and community,  As we celebrate ten years of Conquering CHD, it also marks my 18th year as an advocate for congenital heart disease. I am entering into a new season of life as our youngest son has successfully transitioned to managing his CHD care and is off to college this fall. It is time to pass the torch to Carissa Ostrom as Executive Director and Karen Grossich as Outreach  Director. As our Operations Director, Carissa has demonstrated excellent leadership, passion and capability to be successful in this role. I have complete confidence these women will lead the or ..read more

Research Matters. Conquering CHD exists to conquer the most common birth defect. As an organization made up entirely of CHD patients, families, and medical experts, we build knowledge, create visibility, and empower all impacted by congenital heart disease.  One way that Conquering CHD achieves our mission is to champion patient engaged research. We do this through advocacy, consultation, collaboration, and direct funding. Our goal is to center the voices of patients and families in new and innovative research that will strengthen our ability to effectively diagnose, t ..read more

Our son Hayden was born on March 12, 2012. His delivery was perfect, born 5 hours from the time I was admitted to the hospital. Right after he was born, he was placed in my arms and I finally got to lock eyes with this amazing little boy who I already loved more than I knew my heart could handle. Getting to Know Hayden We spent the next few weeks at the Children’s Hospital of Philadelphia (CHOP) because he was born with a very rare birth defect called Hypoplastic Left Heart Syndrome and would need to have open-heart surgery before coming home. Life in the hospital was difficult—but learning m ..read more