Luca Me Go
At around 25 weeks pregnant, we unexpectedly found out that Luca had a congenital heart defect known as Aortic stenosis with bicuspid valve. We did not know what the severity would be until he was born and they would be able to get a better view. When Luca was born we found it was mild aortic stenosis, Aortic arch hypoplasia; Bicuspid aortic valve. Over the next few months Luca's numbers got worse and progressed to the high end of moderate. Luca had his first heart procedure, a aortic balloon valvuloplasty, in 10/2018. Luckily this procedure brought his numbers back down to mild - unfortunately he developed a clot and regurgitation. The regurgitation makes him unable to have other cath procedures and his next step will be open heart surgery to replace his valve. We have been very lucky the last 5 years and have not had to take that next step yet. We are hopeful Luca will not have to cross that bridge until he is much older, but again it will always be a waiting game. There is no for sure timeline.
One of our hopes is that researchers will develop another way to help Luca and all the other children - to maybe/hopefully avoid having to go through open heart, live a full life, survive past birth and that first year and other ways to make valves last longer and eliminate the possibility of lifetime medications.
WHY WE WALK:
1 in 100 newborns are born with CHD. Congenital heart disease consists of an abnormality with the heart structure that exists since birth. Of those children 25% will require heart intervention or surgery immediately following birth. Globally, as few as 30% of babies born with a CHD survive beyond their first year. In the U.S., only 50% live past childhood. CHDs are approximately 30 times more prevalent than Cystic Fibrosis at birth, and 60 times more common than childhood cancer. There is no cure. Most of those with CHD that have been surgically repaired are not permanently cured and require life-long specialized medical care across multiple disciplines. Many survivors must endure significant physical and cognitive challenges over their lifetime.
The Congenital Heart Alliance of Cincinnati resolve to overcome CHD. Our work to fund groundbreaking research, global collaboration, and holistic well-being initiatives is critically important. CHAoC mission is to inspire hope in patients and families impacted by CHDs, as well as the medical practitioners that care for them, by helping us build on our history of funding trailblazing programs that improve the odds.
