When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

I became involved when I was pregnant with my son and learned about his heart defects. I wanted to find a community who understood the world I was being thrown into and could help me navigate all the ups and downs along the way.

Can you share with us your heart hero journey? 

Our son, Owen, was born with aortic stenosis, a unicuspid aortic valve, and coarctation of the aorta. He was transferred to Cincinnati Children’s CICU right after he was born and had his first heart catheter procedure at 2 days old. After an up and down recovery, he came home only to find out a few weeks later that he needed a second cath. Thankfully, the second procedure helped and we are currently in a wait and see period before his first open heart surgery.

I have always found hope through learning about stories of others who have experience walking the path through CHD and have enjoyed the connections I’ve formed with other parents in similar situations. It’s so nice to know we aren’t alone, and even better to have support from families locally. I reached out to other parents when I found out about my son’s defects and appreciated the help and guidance I received and I love getting to do the same thing for new families who are just finding out about their child’s CHD.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

The February photo shoot was the first CHAoC event we attended and our family had such a great time at our first Heart and Sole walk in August! It was so nice to join together with family and friends while raising money for a cause that is so important to us. I also enjoy the local heart Facebook group and I am thankful for everything I have learned from the parents in that group. I participate in Cincinnati Children’s Heart Institute Patient and Family Advisory Council and find hope learning about all the things being done to improve patient care and outcomes.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

Reach out to parents who have been in your shoes and don’t be afraid to speak up at appointments with concerns or suggestions. Our cardiologist has been very open to my input as a parent and has gone out of his way to answer any questions I have.

What is your favorite summer activity you like to do with your family?

Our family loves to explore new parks!