Lurie Children's Blog After Heart Disease Diagnosis, Family Turns to Heart Center for a Second Opinion
In many ways, Quinn is like most other six-year olds. Her favorite food is macaroni and cheese, favorite color is purple and favorite thing to do is go swimming with friends. However, unlike many other children her age, Quinn is living with congenital heart disease.
What was first thought to be a heart murmur, turned out to be a subaortic membrane – a form of subaortic stenosis – which obstructs the flow of blood from the left ventricle of the heart to the aorta. Quinn’s family learned of her heart condition in December 2018.
“Our pediatrician had noticed a murmur the year before, but the ‘sound changed’,” said Jennifer, Quinn’s mother. “They said they wanted us to see a cardiologist. When we first went in and met with them, the cardiologist said ‘we have tons of murmurs, it’s probably nothing’. Then the same cardiologist came back after testing and told us Quinn was going to need open heart surgery. We were totally blind sided. From the very beginning, we both were kind of numb. We didn’t even know what to say, she was only 4!”
“It took us a week to process and I came up with a bunch of questions. There really wasn’t much information on the internet to help us understand exactly what we were dealing with.”
Due to the extent of the surgical interventions, Quinn’s family decided to seek out a second opinion to ensure they had all of the information they needed before moving forward with Quinn’s surgery.
“In the summer following Quinn’s diagnosis, I was looking into other options. I went online and started researching the best pediatric heart programs and Lurie Children’s appeared. My in-laws live in Chicago and we were going there in three weeks. So, I called the Heart Center and they were able to fit us into their Priority Second Opinion (PSO) Clinic when we were in Chicago. That’s when we met Dr. Berger and one of the surgeons.”
During their visit with Stuart Berger, MD, head of the Division of Cardiology, and the other members of the PSO team, they received extensive parent and patient education, printouts, drawings, and answers to all of their questions to better understand Quinn’s diagnosis and treatment options.
“We have had nothing but good experiences with Dr. Berger,” said Jennifer. “The PSO support staff, Catarina and Silvana, are so great. They have been really wonderful and are always willing to answer any questions I might have.”
Today, Lurie Children’s Heart Center specialists remain a part of Quinn’s care team as they continue to partner with her primary cardiologist to ensure the best treatment plan available.
Learn more about Lurie Children’s Priority Second Opinion Clinic.
