Carly, born 1993

Carly was born with Aortic Stenosis, Aortic Regurgitation, Bicuspid Aortic Valve, enlargement of her ascending aorta and enlargement of aortic root. Carly did extremely well for her first thirteen years. At around the age of 13, Carly started experiencing many symptoms like shortness of breath, fatigue, dizziness, chest pain, and palpitations. Her cardiologist since birth did not listen to our concerns and would not pursue further tests so when she was eighteen years old, we transferred to the University of Minnesota Amplatz Children's Hospital for a second opinion.

 

The cardiologist ordered a cardiac cath after results from a stress test came back abnormal. They were hoping to balloon open her valve if it was narrowed but weren’t able to because the results showed severe aortic stenosis and severe regurgitation. Our only option was open heart surgery. Within a month we were scheduled for open heart surgery.

 

An aortic valve repair was completed on July 16th 2012. Carly's heart had to be shocked once to get it into a normal rhythm. She would not breathe on her own after surgery. Carly got out of surgery at 11:00 am and did not wake up till 8:30pm. The doctors were worried especially because she had very low blood pressure. They tried to take the breathing tube out once and were unsuccessful. Finally at 11:00pm that night Carly started breathing on her own and was able to come off the vent. After 4 days in the hospital Carly was able to come home.

 

Today, she is on a 30 day event monitor because of tachycardia. The doctors suspect she will need another open heart surgery in 5 years to replace her valve and repair her aorta.

 

Story by Carly’s mom, Susan – Minnesota