David's Story: Advocating for Children with CHD
David Kasnic's daughter Piper was born with a CHD and required immediate surgery to save her life. The life-changing experience inspired David to establish the Pediatric Congenital Heart Association to help other CHD families.
Piper Kasnic was born with Transposition of the Great Arteries (TGA) and had several large Ventricular Septal Defects (VSDs), requiring open-heart surgery to save her life.
I'm not only going to do something to advocate on behalf of MY child, but everyone else's too.
David Kasnic: Congenital Heart Defect advocate
Piper was our first child, born on Independence Day in 2003. I’m very patriotic, so I remember thinking what a great symbol this July 4th baby was going to be. My wife, Jennifer, had a healthy pregnancy with no problems during the delivery. Then, everything changed.
Piper was born blue. The doctor thought she just needed some oxygen to clear her lungs, so we relaxed thinking this was a fairly normal situation. However, as two hours passed without seeing or holding our child, we began to wonder if something was really wrong. When the doctor finally returned, he said her oxygen saturation was not getting better and they were going to call Children’s Hospital of Colorado for advice. He thought it might be a cardiac issue, but wasn’t sure because they did not have an echo machine on site. After some consultation, it was decided that Piper needed to be sent via ambulance to Children’s Hospital of Colorado for tests. So along with Piper, I left Jennifer in the early evening on what seemed like the longest ambulance ride in history—not because we were going slow, but our world was flipped upside-down. Upon arrival, they rushed Piper in to get the echo. About 15 minutes later, the doctor explained that Piper was born with Transposition of the Great Arteries (TGA) and had several large Ventricular Septal Defects (VSDs). Bottom line, Piper required open heart surgery to live.
In the meantime, Jennifer was still at the original hospital in absolute shock. Who wouldn’t be? You're having a baby but there's something wrong and you're away from your spouse. It’s very scary. She checked herself out of the hospital and arrived at Children’s at 2 a.m. We slept on a loveseat in the waiting room that night—the first night of what would be a stressful and sleep-deprived several weeks. We ended up moving our travel trailer into the hospital parking lot and did not leave. Showering and eating in the hospital every day, we worried constantly. “What are we going to do?” “What does this mean?”
At the time, my first thought was that Piper wasn’t going to make it. They had to stabilize her for five days before they could perform the surgery. The operation took a grueling 14 hours from start to finish. As if that weren’t enough, we got a phone call at 2 a.m. with more bad news. We were told that Piper was very swollen and they needed to open her chest to relieve the swelling. Piper was unrecognizable—attached to what seemed like hundreds of tubes and cords.
Her condition improved but she could never get off the ventilator. About 4 weeks later, Piper contracted two infections, requiring her to enter an isolation room. Over the weeks, we had seen many sick babies go into isolation rooms and most did not survive. It was my breaking point. I tried to stay strong throughout the process and be strong for Jennifer, but at that point, I broke. I gave up control and asked God to take care of the rest.
Two days later, our prayers were answered. Piper started to turn around. She was gaining weight, and would soon be able to come off the ventilator. During this entire time, Jennifer didn't get to hold Piper. It's an incredibly tough and heartbreaking situation to live through. You want to be emotionally connected, but that makes it much harder if you then lose the baby.
After six weeks, Piper was taken off the ventilator and could start eating normally. Very quickly after that she improved so much that we finally got to take her home. We skipped all of the usual routines of parents of newborns. Instead, we diligently kept track of everything Piper ate and drank, when we gave her medicines and how much, how long she slept, etc.
As a parent of a child with a congenital heart defect, you want to think you're never going back to the hospital to relive that situation. But as I started researching and getting involved with CHD, I realized that CHD is a chronic, lifetime condition. It was really difficult to come to grips with that. You’re in crisis mode as a parent and you have no clue what questions to ask or where to go for information.
As my curiosity turned to action, my friend Amy Basken, who also has a child with CHD, and I realized that there seemed to be a gap in the pediatric CHD advocacy space. I remember thinking, “How could this be the most common birth defect and no one knows it?” It was at that time I decided, “I'm not only going to do something to advocate on behalf of MY child, but everyone else's too.” We combined my business background with Amy’s advocacy and policy background to establish the Pediatric Congenital Heart Association (PCHA) in Aug. 2013. PCHA’s mission is simple, to conquer Congenital Heart Disease.
There are still a lot of unknowns about CHD. Every parent has questions about what to expect, who to turn to, what the future holds, etc. With PCHA, patients like Piper have a powerful voice, and can collaborate with other CHD organizations to create a much-needed change. By combining programs like patient education, provider education, legislative and grassroots advocacy, PCHA will become the resounding voice for the pediatric patient population.
For more information, please visit ConqueringCHD.org.
David Kasnic and his daughter Piper.