Mia's Story

October 2006*
Pulmonary Atresia, VSD, transposition of the great vessel, and hypoplastic right heart syndrome

It was around eighteen weeks into my wife's pregnancy when our lives turned upside down! The day we received the news that our daughter would be born with a heart that had many complex heart defects was a day we will never forget.

I remember feeling completely vulnerable as numerous scenarios and questions played out in my mind and I wondered how something like this could possibly happen? What happened that day was a nightmare. I will never forget being shuffled out of our scheduled ultrasound over to a level three hospital where we would undergo several more ultrasounds and meet with various doctors and nurses. My wife and I felt completely hopeless and had many different questions….it was at that time we began to wonder if our precious baby would live or die. We were given the honor of meeting our pediatric cardiologist, Dr. Mehmet Gulecyuz, who helped explain everything to us and helped us understand how Mia would survive the heart that was given to her. We will forever be grateful for his compassion and guidance.

At first my wife and I assumed the worst, but Dr. Gulecyuz sat us both down and told us about the plan of the three surgeries our daughter would face. Dr. Gulecyuz gave us so much hope and assured us that with today's technology and unbelievable surgeons like Dr. Ilbawi from the Heart Institute at Hope Children's Hospital in Oak Lawn, IL that our daughter had a chance at life. I knew at that moment that it was going to be a very challenging life for our little girl. We would have to prepare for everything that comes with her open-heart surgeries and life thereafter. We also learned of all the medications she would have to take for the rest of her life to help her function in everyday life. It was a very scary time for >my wife and me, but we felt so hopeful after discussing everything with all of the doctors involved.

Today Mia is three years old. She was born with complex congenital heart defects and has undergone the three-phase surgery to repair her heart: Norwood, Glenn, and Fontan. Mia was born with pulmonary atresia (she was born with no main pulmonary artery), a very large VSD (hole in the heart), transposition of the great vessel, hypoplastic right heart syndrome, and at birth her pulmonary arteries leading to the lungs were completely disconnected! This is a lot I know, but for parents that knew nothing before this day, we became medical experts. As for Mia, although she was a baby that was dealt with so many complications early in life, she has successfully undergone each surgery and I can honestly say she is our hero.

The good news is, Mia is doing extremely well and she is thriving. She is our living miracle and we are extremely grateful to have her in our lives.

*Written by: Jon & Veronica Burk, Mia's parents