CHD Symposium Showcases Innovations
Sixth annual event brings together patients, families and medical professionals to learn more about thriving with CHD.
For the sixth consecutive year, parents, patients, family members and medical professionals gathered to hear from experts on innovations in CHD treatment and care at the CHD Symposium. The event was generously hosted by Children’s Hospital of Wisconsin.
This year’s theme, Growing with CHD: Planting Seeds for a Brighter Future, set the stage for exploring CHD innovations from before birth to adulthood.
On Thursday afternoon, before the event began, TAI Diagnostics gave us a tour of its research lab so we could see some of the fascinating cuttingedge projects they’re working on. The company recently launched its first product, which was a non-invasive test for heart transplant monitoring.
Kicking Off With Expert Advice
The CHD Leader’s Summit on Friday afternoon offered training on parent to- parent support and telling your story. Ryan Freund, a key conference leader, demonstrated by sharing his compelling story. Then all attendees were able to practice their stories, with Amanda Stewart, Nicole Sanchez and Shannon Shuir being brave enough to present to all.
Friday ended with a fun family reception at Dave & Busters.
The purpose of the CHD Leader’s Summit was to bring all CHD leaders together, not just Mended Little Hearts leaders. It was attended by top leaders from the Adult Congenital Heart Association and Children’s Heart Foundation as well as CHD leaders from local CHD organizations around the nation.
Speakers Shine at Saturday Symposium
On Saturday, the CHD Symposium began with the first panel of experts from top children’s hospitals speaking on “Innovations for the Early Years and Beyond.” Dr. Mike Mitchell of Children’s Hospital of Wisconsin spoke about innovations in CHD surgery, Dr. Shabana Shahanavaz of St. Louis Children’s Hospital spoke on innovations in cardiac catheterization, Deb Discenza, founder and CEO of Preemie World, talked about how parents can advocate for their child and Dr. Ryan Moore talked about cool innovations in parent and child education.
All of the speakers received an enthusiastic response.
“This was superior programming in every way,” said one attendee. “We were very thankful for the time, expertise and effort of each speaker.”
Next came the panel, “Issues Children and Families Face During School-Age Years.” Tracie Haugan from Project Adam spoke about school readiness and how to make sure your child’s school is prepared for an emergency.
Dr. Cheryl Brosig of Children’s Hospital of Wisconsin talked about issues to be aware of during school years and what parents can do.
At the same time as the second panel, MLH Bereavement Chair, Sharee McCoy, led a Bereavement Breakout Session. Sharee is an incredible leader and provided a safe space for those who have lost loved ones to CHD to share and connect.
Panels Help Parents and Families
The third panel, “Adolescence and Teen Years,” took parents and families through what can often be a trying time. Susie Pepp of Phoenix Children’s Hospital addressed health issues in the older child, while Leslie Scott of Children’s of Wisconsin and Caley Johns of Texas Children’s Hospital spoke on a high-demand issue: navigating fear and anxiety in adolescence. Adrienne Garo of University of Virginia helped us understand how to transition to specialized adult CHD care.
The final panel, “CHD According to Me,” allowed panelists to present from their specific point of view. It featured Chrissy Barbera, a medical professional who is also an adult with CHD; Ryan Freund, the parent of a young child; Aidan Pearsall, an elementary schoolaged child; Caleb Schendel, a teenager; Kayla Dennis, a young adult with CHD; and Nicole Sanchez, an adult with CHD who is also a mother of two.
This panel is always particularly popular, and one participant said, “I loved hearing the perspectives from the children and adolescents. All the speakers were great. I think the kids were nervous but did a fantastic job!”
We already have many people asking about next year. As soon as we know, so will you. We are looking forward to seeing you all again!
Special Thanks to This Year’s Sponsors!
