Life with CHD is hard. Not only for the child but the entire family. Katja doesn’t know a different life. She only knows the one she was born into. A family constantly preparing for the next surgery, living Cardiologist visit to visit. We lived our life in 6 month increments. Dreading what the next visit would bring, then relief to live “normally” for another 5 months before the cycle started again. 

To say this journey hasn’t been difficult would be a lie. It’s not easy trying to explain to 3 other kids why we can’t make future vacation plans, why we can’t promise to do something or why we go into total germ lock down from October to April. 

Then came the cross country move. Moving 2,000 miles is never easy but with a medically fragile child, it is a living nightmare. We packed up our family of 6 (at the time) and moved from Chicago to Seattle in March 2017. Katja was 20 months old. We had to move entire medical teams and make sure that Seattle Children’s was prepared to handle Katja when the time for OHS #2 arrived.

And arrive it did. Katja’s first Cardiology visit (6 months after her last Chicago visit) showed her Truncal (aortic) valve was failing. We moved to visits every 3 months. In early 2018 her team at Seattle made the call, it’s time. However Katja was tiny (25lbs at almost 3 years old) and the team wanted to get as much weight on her before surgery as possible. We pushed hard, gave her anything her little heart desired (hello whipping cream chocolate milk). I’m pretty sure we also put on a good 10lbs during this phase! Haha! 

Katja was now 30lbs and ready for surgery on June 26th 2018, just one month before her 3rd Birthday. But we had a problem. Katja was an active toddler. Her only option to repair her aortic valve was a mechanical valve. This means life long anticoagulants. How could we alter our toddlers’ futures like that? No sports, dietary changes, multiple blood draws to check levels, having to be very careful of falls/bumps. I said NO. Yeah, I’m that Mom. So we sat down with the team and talked about options. I made an offhand joke “Can’t we just Frankenstein her a valve of her own tissue?”. Her surgeon lit up like the 4th of July with excitement. 

That began the journey of Katja’s Ozaki procedure.