About Harper

Harper was diagnosed with a congenital heart condition known as Congenitally Corrected Transposition of the Great Arteries (CCTGA) while I was still pregnant with her. I was 30 weeks pregnant when it was diagnosed. My husband held my hand as a specialist from Cincinnati Children’s Hospital drew out the details on a white board in a sterile white room that smelled strongly of disinfectant.

Her condition is rare and affects 0.5-1% of the people with heart disease. That averages out to be between five and ten thousand people. Some may not know that they have it and may go their whole lives without knowing. Others will need a heart transplant to save their lives before succumbing to heart failure.

Thanks to the advances in sonography used in prenatal care, these conditions are slowly being diagnosed much earlier in life. I’m told that the fact they seen it at all was impressive overall and speaks to the skill of the sonographer. She will need a lifetime of monitoring and it is currently unknown if she will be in need of heart transplant someday.

I was overall disappointed in the lack of material on her specific condition. Even while at the specialist, they did not have material available to be given in the neatly organized discharge papers. They searched through their databases and printed off information that they deemed appropriate and handed us the print outs stappled together. I hope that Harper’s story will help others like her.