Thanks to Jessie Penfold, Chapter President for the MN Chapter of Conquering CHD for sharing a bit about her family’s journey and Conquering CHD…
Back in 2011 when our unborn son was diagnosed with multiple heart defects, there were no public groups or organizations that I knew of specifically for those in the CHD community. After our son was discharged from his corrective open heart surgery and pacemaker implant stay, I felt so alone, even in our tight knit military community. I couldn’t put into words what we all just went through, the intense fears and uncertainties along with the images of babies and children right after open heart surgery was not something I could ever prepare myself for or communicate to a person who had not already experienced it. I unconsciously distanced myself from other parents and friends because there was just no way they would understand our new life. Over the years, our son, Michael, would experience heart failure, be at risk of sudden cardiac arrest and undergo 4 more closed heart surgeries. Still feeling alone in our journey, the only place I felt at home was in the hospital. It was an odd feeling, hating being in the hospital yet also feeling at home there. Everyone just understood us. It wouldn’t be until 2019 when I would discover the community I didn’t know I needed.
After our son’s CHD experience, my husband decided to leave the Marine Corps and become a pediatric cardiologist. During my husband’s medical school training, he had the opportunity to shadow our son’s heart surgeon for a week during open heart surgeries. During their lunch break, he mentioned an organization called Conquering CHD. He told him this organization was different from others. To be a board member, you had to be a parent or living with CHD to join. He also told my husband that his wife was a member of the Florida chapter and they were looking for more members to join the chapter board. This was how we learned that our son’s heart surgeon was also a parent of someone living with CHD.
Immediately, I was interested and wanted to attend a meeting to learn more about the organization, entertaining the idea of joining the board. At our first meeting, I knew something was different. The energy in the room wasn’t that of parents seeking only connection with other CHD parents but also a deep desire to make a difference. The more I learned about Conquering CHD, the more excited I felt. So, I joined the Florida chapter as Hospital Coordinator.
During our meetings, I learned how Conquering CHD not only provided opportunities to gain community by hosting holiday heart themed parties and support groups, but they also provided hospital kits to the patients and families on the floor. These kits are meant to make the research experience easier as they are filled with literature to help guide patients and parents on what questions to ask their doctors, information on FMLA and Social Security, a guide for your child’s future care or ACHD care, and links to the website to inform them on specific heart terminology. Also included is a Hospital Navigator to help the patient find the closest and best hospital for their procedures.
Learning more about the organization, I was most excited about The Heart Connection Conference, Conquering CHD’s Advocacy Conference that is held annually at our nation’s capital. The Heart Connection Conference is a two-day legislative advocacy visit to Capitol Hill. During this event, patients and families affected by CHD as well as medical professionals in the field and federal policy members, unite to educate members in congress about CHD and ask for the federal government to fully fund the Congenital Heart Futures Reauthorization Act. This act was placed into law in 2018 to fund millions towards CHD research and data collection for the CDC.
Pre-Covid, CCHD held annual Gala events in major cities including San Francisco, Denver and Milwaukee, and Transparency Summits partnered with major hospitals nationwide. Our partnership with doctors, parents and patients of CHD truly creates a unique team where we exist to conquer the most common birth defect. Conquering CHD will ignite a fire in you. They will encourage you to share your story, can provide you with local support groups and help you navigate through your or your child’s CHD journey while also being completely transparent on public reporting. I encourage you to check their website and to see if there is a local chapter in your state.
Conquering CHD has built one of the largest networks of CHD patients, families, and providers in the nation. No matter when the CHD diagnosis was made or where patients and families are in their journeys, their programs provide crucial resources, education, connection, and hope for patients and families at any point in their CHD journeys. They know, first-hand, the importance of timely information in making decisions, support during difficult times, and the desire to spread as much awareness as possible. They are changing both the national landscape and empowering patients and families in their local communities. Some of their programs include virtual chats for teens and mental health support, Heart Walks, teen transition kits, Facebook groups to connect with other teens or adult patients and bereaved families affected by CHD, and care packages.
Conquering CHD came into my life at a time I was searching for community. We were 6 months into our diagnosis and recently moved to a new state. I was looking for some type of support and I came across Conquering CHD doing a search. I joined the community and used the many resources on the website. After a few years I reached out to them about becoming more active and ended up joining the Wisconsin State Chapter board in 2021. I love sharing resources with families on how to navigate their CHD journey and Conquering CHD has taken the time to create those resources for families from prenatal diagnosis all the way up to adulthood.
Heart Mom, Carissa
Learn more at: https://www.conqueringchd.org/
Join your local chapter: https://www.conqueringchd.org/involvement/connect-with-others/
Interested in volunteering to host our booth at Conquering CHD’s Heart Walk in Bolingbrook, IL on May 21, 2023? Email brooke@campodayin.org for more information!
