Who Do You Run For?

HEARTest Yard + Showmars 5K Featured Families

The Gusmer Family

Tell us your CHD story with The HEARTest Yard Program:

Our son, Levi was born in April 2023 with double inlet left ventricle with ventricular inversion, l-transposition of great arteries and severe pulmonary atresia. He has completed his Norwood (8 days old) and Glenn (4 months). The HEARTest yard provided our family with support though in home nursing, CHAMP clinic and now the neurodevelopment clinic. These resources have a positive impact on Levi’s growth, development and helped keep us out of the hospital in between his surgeries. With his Fontan still to go in a few years we are grateful to know we can continue to build our relationship with the HEARTest yard.

What is your hope for the future of CHD?

That all families impacted have the opportunity or access to receive support and for research to continue to evolve treatment strategies.

The Dix Family

Tell us your CHD story with The HEARTest Yard Program:

During my 35 week appointment, my doctor asked me to come back in later in the week for a blood pressure check. When I went in on Thursday, the doctor decided to do a stress test as well. During the stress test, Emma Grace was not moving and I was taken into an ultrasound room. When completing the ultrasound, Emma Grace's heart rate was so fast it couldn't be picked up on the monitor. I was sent to Piedmont Medical Center for observation. While there, her heart rate was measured at 300 bpm. After talking it over with the doctors there, it was decided that after delivery Emma Grace could receive better care for her heart at Levine Children's Hospital in Charlotte. Our family opted to be sent to CMC-Main prior to delivery so I could be in the same hospital as Emma Grace. We arrived at CMC late Thursday night. Friday morning, we met with the pediatric cardiology team at Levine and learned that Emma Grace has Wolff Parkinson White Syndrome. While WPW isn't life threatening, we learned she may or may not need medication but a simple procedure could be done when she was older to correct her heart. On Saturday evening, Emma Grace was delivered via C-section. I got to see Emma Grace briefly before she was taken to the NICU and I was sent to recovery. My husband, Jon, split his time between the two of us. On Sunday morning while visiting Emma Grace, Jon and I met Dr. Smith and Mrs. Kari in the NICU. We often talk of this initial meeting with these two. Dr. Smith was confident in his treatment plan for Emma Grace--Jon loved Dr. Smith's confidence but I wasn't so sure. Mrs. Kari was the calm force I needed to know my child would be ok. Mrs. Kari told us her WPW story and told us not to ever limit Emma Grace. Our family spent the first four weeks of Emma Grace's life in and out of the hospital getting her three medicines regulated. Jon and I often called LCH our home away from home. Mrs. Allison and Mrs. Teresa were some of our favorite people on the eighth floor. At eight months old, Emma Grace was able to come off all of her heart medicines. Dr. Smith assured us Emma Grace would be fine and she would let us know if her heart got out of rhythm. At our last visit with Dr. Smith we learned he would be retiring but we would love his replacement, Dr. Bryant. Through our visits with Dr. Bryant, we felt very confident in him as well. Three months shy of turning three, just as Dr. Smith told us she would, Emma Grace let Jon know something was not right with her heart. We made a visit to the clinic. Emma Grace spent the next several months on heart medicine to give her a little more time to get a little bigger. In July of 2019, Dr. Bryant let us know he thought Emma Grace was big enough if we wanted to go ahead have her ablation procedure. In September of 2019, Emma Grace had her ablation procedure. Emma Grace was released from cardiology care in December 2020. I remember crying as Emma Grace and I left the clinic. I was scared of raising a child without the cardiologist. People still ask about how Emma Grace is doing health wise. I smile and think about the feisty, sassy child she has always been. I think of how she has done things her own way from birth. Emma Grace has always been an active child. She LOVES being on the swim team, doing gymnastics, and playing softball. She has even tried volleyball and soccer. What is your hope for the future of CHD?: My hope for the future of CHD and CHD families is to know they are not alone. While Emma Grace’s heart defect was not life threatening, because our family has not been shy about sharing our story, we have had a few families to ask us to be sounding boards for their families when they received diagnoses for their children.

The Largen Family

Tell us your CHD story with The HEARTest Yard Program:

Our story began in December 2017 as we went for a gender ultrasound. During the ultrasound it was found that our son had blood pumping out and into his upper left heart chamber. We were referred to a cardiologist in Roanoke, Va (we live in Hillsville, Va). During the cardiologist appointment we learned our son, Charlie, had Hypoplastic Left Heart Syndrome. We were then referred to the University of Virgina Children’s Hospital. During the trip and meeting with the team of doctors at UVA, they informed me (as a big sports fanatic) of the Olsen story and encouraged me To reach out to Greg as support. Surprised enough, Greg emailed me back and spoke on their story with Hypoplastic left heart syndrome. We tried to arrange for my oldest who was a big football fan to meet Greg during a preseason game in Carolina. Though we never actually met, Greg was great support and even sent my oldest son a signed football (we will never forget this thoughtful action). Throughout the remaining pregnancy, we spend many travels to UVA and Roanoke, Va monitoring our son’s growth and preparing a plan for his arrival. Once Charlie was born at UVA on April 17, 2018 he was in the care of a great team of doctors that preformed his first surgery when he was 3 days old. We spend over 45 days of his first 60 days of life (the first 30 straight) at UVA for eating and getting him stabilized for the outside world. He had his second heart surgery around 6 months old, and his third open heart surgery at 4 years old. Today, Charlie is 5 years old, in kindergarten, and thriving to the best of his ability. This past spring he played his first tee-ball season and looks forward to 2024!

What is your hope for the future of CHD?

My hope for the future is that with technology we are able to do more during pregnancy to prevent surgeries for children after they are born. I hope that we are able to open those closed valves up and help them form natural so that when they are born, they don’t have to endure the surgeries and that the families are able to not have the stress that comes with it. I hope we are able to find ways that eliminate the worry and stress in these children with heart defects so that one day, it isn’t as common to hear about.