Today marks the beginning of CHD (Congenital Heart Defect) week (Feb. 7-14). Two years ago, I rarely thought about such things—but it became a consuming feature of my life when our son was diagnosed with one in 2023. Our Gus was born with hypoplastic right heart syndrome (HRHS). HRHS is less common than HLHS, its left-sided counterpart. In the US, 1 in 3,995 babies are born with HLHS. It's harder to pin down the numbers for HRHS, but one estimate puts it at 1 in 60,000. There are estimated to be fewer than 50,000 people in the US living with HRHS. HRHS is a range of right-sided heart defects (and a subset of single ventricle defects) usually marked by the underdevelopment of crucial structures like the right ventricle or pulmonary valve. Within a few weeks of being born, Gus received an additional diagnosis of PAIVS (pulmonary atresia with intact ventricular septum) and coronary insufficiency. PAIVS is even more rare, comprising less than 1% of all heart defects. What this meant for us is that he couldn't follow a typical approach to addressing his underdeveloped heart. Children with HRHS and HLHS typically undergo several sensitive reconstructive open-heart surgeries during childhood. It's a difficult road that families face, often finding themselves in and out of the hospital for years. This experience marks the distinction between the defect and the disease. Congenital heart disease highlights the long-term impact of being born with a congenital heart defect. Gus' heart was beyond repair. He would not undergo any reconstructive surgeries. The only viable option for him was a heart transplant, which he received on January 16, 2024. Today, we are missing our little heart warrior—as we do every day. CHD impacts families, not just individuals. 40,000 children are born with a CHD every year in the US. That's 40,000 families: parents, siblings, grandparents, aunts, uncles, and cousins. Today we are mindful of the many people we've met along the way who have walked this difficult road. God, give us grace! We are so thankful for the time God gave us with our son. While we lost our heart warrior, we are still heart parents. Today we wear red in honor of Augustus Elliott Joubert (2023-2024). I've included a picture of him from Feb. 7, 2024 below, only days after coming off of a 20-day period on ECMO. The bear, given to us by the hospital, houses a precious recording of his birth heart. I listen to it almost every day. #CHD #HRHS #CHDAwareness #WearRedDay #WearRed4CHD #1in100 #TeamGus #NationalWearRedDay #CHDWeek

I’m so delighted about the death of DEI #dei