A Kid at Heart: Living with Congenital Heart Disease as an Adult

Jenni Sego and Cassie

Jenni, 39, was born with ostium primum atrial defect (a hole in the heart) and her daughter Cassie, 4, also was born with a heart defect. Both are patients at Children’s Hospital of Wisconsin’s Herma Heart Center.

I was first diagnosed with a heart defect in 1975 when I was 4 years old. I had open-heart surgery to repair a large hole between the two chambers. I grew up a very normal kid and never considered myself to be someone with a heart problem.

More than three decades later in 2008, it was discovered through an employee of mine that I had very high blood pressure …190/100! I tried to justify it with being a mom working third shift and chasing three kids around. At the urging of my family and the employee, I went to see my primary care doctor who immediately said I needed to see a cardiologist. I have not been to one since I was a child. I remembered my mom telling me about the Adult Congenital Heart Disease Program at Children’s Hospital of Wisconsin. She said Dr. Michael Earing was the person to see.

I went to see Dr. Earing March 6, 2008. After a very thorough appointment with several echocardiograms, I was told I had another defect – coarctation of the aorta – that would need to be repaired. With Dr. Earing’s encouragement and after talking with the different doctors who could potentially fix me, I went through with the surgical repair.

I am now very conscious of listening to my body. I pay attention if something seems a little off. I visit Children’s Hospital of Wisconsin’s Herma Heart Center once a year for checkups and will continue to do that for the rest of my life.

If you or someone you know is an adult living with a congenital heart disease, call (414) 607-5280 to make an appointment to be seen in the Adults with Congenital Heart Disease Program.

~ Jenni Sego, guest blogger

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