Who Do You Run For
HEARTest Yard + Showmars 5K Featured Families
Harveys Family
We are the Harveys – Evan and Ashley, our daughter Emery (4) and our heart warrior, Asher (2). We are natives to North Carolina and currently live just north of Charlotte.
We didn’t know much about Levine Children’s Hospital until we received Asher’s diagnosis. We went to the OB/GYN for our routine anatomy scan at 22 weeks, which yielded “atypical results” on the Friday of Memorial Day weekend. I will never know how many calls were made and schedules were rearranged in the short time between 9am and noon for us to get in for a fetal echocardiogram with LCH, but we will forever be grateful for the massive work that made it happen. The back-to-back appointments at LCH took us to the end of the longest day of our lives and verified the results: our baby has tricuspid atresia with transposition of the great arteries, atrial septal defect and hypoplastic right heart syndrome. Dr. Rene’ Herlong was the doctor who sat with us in the consult room and walked us through Asher’s plans – I still have the hand-drawn sketches he made for us that diagrammed Asher’s medical future. He told us that Asher’s diagnosis requires a 3-step palliative heart surgery schedule that will allow Asher to live his best life with the heart he was given. His kindness and genuine empathy for our journey was the light we held onto that day and the months leading up to Asher’s birth.
Asher had his Norwood procedure at 6 days old. We spent approximately 25 days at the hospital, with one brief return to CVICU after the team discovered a narrow artery between his left lung and heart. There was a quick overnight trip for a routine heart catheterization around 4 months old to prepare for our next surgery, the bi-directional Glenn shunt, when Asher was exactly 6 months old. Since then, we have had (for now) 2 other overnight hospitalizations due to respiratory distress brought on by viruses but with the help of our team, we have found a daily regimen that allows us to monitor Asher at home as his immunity builds up against other infections.
Asher’s CHD has been like a shadow that follows us everywhere, all the time – we have been fortunate to have experienced very few health complications because of Asher’s heart. We always tell people that unless you see Asher with his shirt off, you would never know he has his CHD! But when we do have struggles or when see him short of breath doing “normal” physical activities, we are reminded about how strong and resilient he is. We worry about making sure he has the right amount of socialization that we can responsibly expose him to while keeping him as healthy as possible. Financially, each year we work to ensure we can access funds needed to meet our insurance deductibles – at this point, we try to plan for at least several dozen doctor visits and potentially a few hospitalizations. In the sense that we are not always being reminded of what Asher’s CHD means for him, the thought of it and how quickly it can create a health concern is always there – the shadow that never really goes away.
The first few months after Asher was born were really trying for our family – everyone was navigating big fears while experiencing immense joys and learning to live in every moment, taking the time to savor the small things that had taken on such great meaning since Asher’s diagnosis. We had the greatest blessing of being beneficiaries of The HEARTest Yard’s at-home nursing program during the dangerous period between the Norwood and Glenn procedures. Our terror at not being able to identify what was “normal” versus what was a red flag was real. Without the support of the staff who came by and helped us through those months, we know we could have made it to the 2nd surgery but it would have come at great emotional and mental costs.
Asher has been to The HEARTest Yard Congenital Heart Center once and we could not have asked for a more welcoming place to examine Asher’s neurodevelopmental skills. Our visit from the end of 2021 was a couple of hours long, but it didn’t feel like it between the state of the art observation/playroom and the staff; they were able to engage and play with Asher without him realizing they were doing their examinations. Asher warmed up to all the professionals who worked with him that day and we look forward to going back for our next visit.
We want the entire Olsen family to know that we will always shout from the rooftops about the compassion of The HEARTest Yard – they are true heroes to share their personal journey with the world. We feel like we joined a terrible club when we found out about Asher’s CHD, but the community and the heart of this organization have provided support when we have needed it most. We are one of so many families that have found comfort in their story and are indebted to them for the spotlight they are shining on congenital heart defects.
Chavis Family
We run for Hank…. our nearly five-year-old son was diagnosed shortly after birth with Tetralogy of Fallot. We run because we expect endless opportunities for him and do not allow him to be defined by his diagnosis. We run because the initiatives funded by the Heartest Yard Foundation are truly life-changing for Hank and other children with congenital heart defects. The HEARTest Yard Program gave us the confidence to care for Hank appropriately at home. The HEARTest Yard has brought awareness of CHD to our community, and it provides a platform for our friends and family to support our efforts to improve the quality of Hank’s life and those like him with CHD. We run because we are forever grateful to this foundation for giving Hank the opportunity to thrive.
Register Family
Our son, Brantley Douglas Register, was born on February 3, 2014, with an undiagnosed condition known as Hypoplastic Left Heart Syndrome (HLHS). Shortly after Brantley was born, his hands and feet started turning blue. The nurses quickly checked his pulse oximetry and immediately realized there was an issue as his readings were dangerously low. After being diagnosed with HLHS, he was transferred to Levine Children’s Hospital that evening. Less than 24 hours after being born, Brantley received lifesaving open-heart surgery. Before going home for the first time, Brantley spent 63 days in the CVICU and 74 days at Levine Children’s Hospital.
During our stay, we met Greg and Kara Olsen and their son TJ who also has HLHS. Greg and Kara shared their journey with TJ’s special heart, provided lots of support and encouragement, and told us about their foundation, The HEARTest Yard. We discovered that The HEARTest Yard provides in-home nursing care for children like Brantley between their first and second heart surgeries, typically 6 months. The time between the first and second surgeries is critical, and these children live in a bubble. It is crucial to their survival that they do not develop any illness, that their pulse ox and weight are checked daily, and that they follow a strict feeding protocol. The HEARTest Yard provides nurses trained to take care of patients with HLHS, who can watch for the warning signs that something is wrong and provide peace of mind for the parents of these children. Often private insurance will not approve in-home nursing care, and most families cannot afford the cost independently. This was one of the reasons Greg and Kara told us they founded The HEARTest Yard.
Brantley was a recipient of in-home nursing care through The HEARTest Yard. As parents of a child with a congenital heart defect with the highest mortality rate, we were relieved, ecstatic, and overwhelmed with gratitude that such a foundation exists to help families like us. We thought we were having a normal baby when we went to the hospital to have Brantley. One can only imagine the state of shock that we were in when we found out about Brantley’s special heart. So many emotions run through your head when faced with a situation like we were in. What do we do? What will happen next? Will he be ok? What will we need to do to take care of him? How will we be able to afford to take care of him? Will one of us need to quit our jobs? The answer to our questions was The HEARTest Yard.
In 2014 and 2017, Brantley returned to Levine Children’s Hospital for his second and third heart surgeries. We absolutely feel that the nursing care Brantley received during the first and second surgeries helped provide the best possible outcome we could imagine. Without the nursing care provided by The HEARTest Yard, we feel that Brantley would not be the thriving, healthy FIVE-year-old that he is!
Fallon Family
The HEARTest Yard has been a part of our family’s heart journey since the day of diagnosis. At Nora’s 20-week anatomy scan, we learned she would be born with Hypoplastic Left Heart Syndrome, a condition we had never heard of before. Searching the internet for information, we came across the Olsens’ story and their foundation to support heart families like us. We quickly signed up after seeing they had a 5K just a few weeks later. The 5K was our introduction to the heart community, and the positivity of the day was a bright spot for us while we processed this life-changing news.
When Nora arrived that fall, she spent several months in the hospital recovering from two open heart surgeries and some significant complications. We came home with nursing support provided by the HEARTest Yard, allowing us to return to work with peace of mind about Nora’s care.
Our family and friends returned to the 5K the following May, with Nora in tow, and celebrated everything she had overcome the previous year. Nora has a long journey ahead, but she is now 18 months old, walking, talking, and keeping up with her older sister, thanks in part to the support we received from Levine and the HEARTest Yard.
