After Owen was diagnosed with a heart defect, we were told the only chance of survival was a three staged surgical intervention…the first starting at 7 days old. Those first days in the hospital were a whirl wind of emotions, a crash course in cardiology, a test of sanity, an experiment in sleep deprivation and a stress endurance test. My husband and I quickly realized that looking at the big picture, all that Owen would have to endure in order to survive, was seemingly impossible. We had no idea how a newborn baby was going to sustain 3 open heart surgeries. So, we got realistic, we stopped looking at all he had to survive and only looked at the next step. Whether it was getting Owen successfully to the next surgery or to the next procedure, our mission never extended past a few months. There were times when we could only set goals as far as the next minute or the next second. He had to stay alive just one more minute….
Owen in recovery after the Fontan
After a long 6 years, Owen has survived all three stages. We saw him through every surgery, every procedure, every complication, every victory.
After the last and final stage of his heart reconstruction, Owen’s recovery was swift. He was on his feet and walking 3 days post op! Owen did struggle with fluid draining issues but that is a fairly common complication and in most cases easy enough to manage. After being admitted for a short 12 days, Owen was discharged and back home. This was a record breaking short stay for Owen. We were beyond thrilled with his eagerness to get back to his home routine and back to school with his friends. We discovered that Owen had more energy than he had ever had before. His running around did not stop from morning until night. He is able to play outside in the snow and enjoy all the things healthy hearted children love about being outdoors. He was cashing in on six and a half years of lost outdoor time!
Owen taking his first steps after surgery with his Dad and Big Sister
So, now what?
Almost 7 years ago,we naively thought that once the 3 stages were completed, Owen was done. But it is not over, not by a long shot. He will, for the rest of his life, have a specialized cardiologist monitoring him very closely. There are medications he will be on for the rest of his life. It is almost certain that he will require more procedures…but when? There is no answer. For six and a half years we were living with the goal for getting Owen to the final stage. His entire life was about getting to the fontan. Now that we are here, we are left in a strange new world. The number of adults who are alive with Owen’s defect is very small. It was only in the mid 1980’s when the possibility of surviving this defect was made possible. There are no older adults with his defect. They do not exist.
Our agenda is a little bit different now. While we cannot ever act as if his heart is fixed, we can continue trying to give him as ‘normal’ a childhood as we can. We let him play and go to school like other 6 year old boys. We sign him up for sports just like we do his brother and sister. We do our very best not to limit him or stop him from trying anything he wants. We work on teaching him to listen to his body when it says, “I need to catch my breathe”. We expect him to tidy up after himself, put his dirty dishes away and put his laundry in the hamper. Owen will always have challenges in his life, be it heart related or side effects of having a congenital heart defect. While we can never become complacent and must remain vigilant in monitoring him for signs of trouble, we can breathe a sigh of relief that for now, there are no major procedures in the horizon.
Laura is a regular blogger for Cardiac Kids. Click here to read her bio and find out more about Owen’s journey.