Congenital heart defects Utah CHD

Family and Patient Perspectives

Maddox

If you’d asked us 8 years ago how CHD affects our family, we’d be telling a different story. The first 3 years of Maddox’s life, our world revolved around surgeries, appointments, and medication. It was difficult to balance our time between all of that and our then…

Joseph

My name is Joseph and I was born with CHD (Congenital heart disease). My first open heart surgery was the day I was born. I had my second surgery when I was just over 1 year old and my 3rd when I was 7. To be honest, I don’t remember…

Matthew

I was born with a condition called coarctation of the aorta and bicuspid aortic valve. Around 5 days of age my parents noticed I was breathing fast and took me to the local hospital. I was life-flighted to the children’s hospital and one day later had…

Carter

My mom and dad tell me that my heart is different. It’s different than kids my age. Sometimes I feel different. I can’t run as fast and as far as other kids. My body has to work twice as hard as they do. But I feel like I am the same in other ways. I go to school like…

Nathaniel

My name is Wendy and my third child, Joseph, and my fifth child, Nathaniel, were born with complex (meaning multiple defects) congenital heart disease. Today both boys are adults who are responsible for ensuring that they receive the correct health…

Carter's Parents

So, he’s OK now then? This is a question I received whenever I tell the story of my son’s journey thus far as a ‘heart kiddo’ (child with congenital heart disease). This is such a relative question. OK meaning is he going to live? OK meaning is he going…

Tiffany

As someone born with a bicuspid aortic valve (BAV), critical aortic stenosis, dilated aorta and a patent ductus arteriosus (PDA) I was always told that when I wanted to consider pregnancy it would be a long thought out process to determine if…