Heart to Heart: Ryan and Kirk’s CHD Story – Part 1

Our son Ryan has always been a heart warrior – that’s part of the deal when you’re diagnosed with a congenital heart defect (CHD) as a baby. But he and our family didn’t truly become heart advocates until a fateful visit to our state’s capital city about four years ago.

Our family’s first foray into CHD advocacy in Columbus, Ohio didn’t have anything to do with politics or government as you might think. Oddly enough it was a soccer game. Since then, we’ve told Ryan’s story in books, on Capitol Hill and to other CHD families in hopes of someday finding a cure.

Ryan is the third of our four children and the youngest boy. Pregnancy with Ryan went fine and his delivery was going fine, too, until it wasn’t. Ryan’s shoulders got stuck, and as the doctors and nurses worked to deliver him safely, we held our breath waiting to hear that first beautiful cry – but it didn’t happen.

Emilie and I looked at the faces of the medical staff standing around us and we saw fear in everyone’s eyes. Ryan turned violet when his umbilical cord was cut and time seemed to move in slow motion. Still, no crying.

Doctors found Ryan’s blood-oxygen levels to be extremely low, in the 40 percent range, so he was taken to the NICU and shortly after rushed to Cincinnati Children’s.

After an echocardiogram (ECHO) was performed, Ryan was diagnosed with pulmonary atresia with intact ventricular septum (IVS). At four hours old he had his first life-saving cardiac procedure when a valvuloplasty was performed by Dr. Russel Hirsch. It was all foreign language to us, even though both of us parents work in healthcare.

We have trouble finding the words to fully describe how those first few hours of Ryan’s life felt, but horrifying, hopeless and helpless are all part of the description.

As we processed everything that had just happened, we were scared and overwhelmed. Would Ryan be able to live a normal life? Would he even survive? How did this happen to our baby?

We’d love to be able to go back and comfort ourselves in those days that followed. We’d assure ourselves that not only would Ryan be ok, his little heart would open our lives to experiences and passions that we never dreamed would be part of the fabric of our family.

Come back tomorrow for the part about the soccer game in Columbus – we still get chills thinking about how it all happened.

Editor’s Note: “Heart to Heart” is a 3-part blog series. Read Part 2, Ryan Meets Kirk Urso, and read Part 3, Ryan Goes to Washington, DC.