written by Ashlen Johnson, Maximus’s father

It has been almost 4 years now since the pediatrician first heard the heart murmur. Thinking about it now is pretty remarkable. We had no idea the journey we were about to embark on. Our son Maximus was a growing young kid, in the 90th percentile of everything. We had no idea that there was anything wrong, until during our 4-month checkup, when the pediatrician heard a murmur. To be completely honest, I did not even know what a Heart Murmur was or the significance. Being a first-time parent, ignorance was bliss. I was a 26-year old new dad who just figured that these things are pretty common. It wasn’t until we were in our first echocardiogram that I started to realize that there was something serious going on.

The wait in the back room while they were looking at echo results felt like I dove into a pool and forgot how to swim.

It was as if I could sense that everything was about to change. We spoke to our P.A. and she mentioned that they found a few things that they need to talk about. She wanted to bring Maximus’ case to their study group. She said a few medical terms here and there, but all I could focus on is that something is wrong and there is nothing I can do about it.

After several weeks and several conversations with the P.A., the staff had decided that it was in Maximus’ best interest to have surgery. Naturally, as I parent I expected the worst and anticipated this news. Maximus had a Coarctation of the Aorta and work done to his Mitral Valve. The staff at Children’s Hospital in Omaha were excellent during this process and we met with Dr. Hammel. His demeanor was exactly what I want from a surgeon – right to the point! He said that there are not a lot of surgeons in the country that does this particular surgery the way he does, however he had a lot of experience and research to backup his methods. All I remember from my visit is I remember the feeling that I am going to have to trust my only child (at the time) to this guy.

On January 24, 2013 and at 8 months old, Maxiumus had a heart surgery. I remember putting on his baby Rex Burkehead jersey in the morning of the surgery and the rest is a haze. Sitting in the C.A.R.E.S unit, to going to the consultation room, to having to wait for the PICU to have any open beds, all went relatively fast. The recovery went faster than I thought as well. A week later you could hardly tell that this beautiful kid had just had is chest opened up. It was a successful surgery, a successful recovery and I was just happy to be able to take my son home and put all of this behind us. Ignorance is bliss.

We were having echos consistently to monitor how his heart was responding and starting to get back into a normal routine when at his one year check up we were notified that his Aortic Valve was still leaking and not responding the way we wanted it to. Even though he was still growing and showing no symptoms of anything wrong, at 21 months old on Feb 14, 2014 Maximus had his second surgery. This time was much different. We knew what to do, we were prepared and also experienced. Getting the second surgery was night and day difference, except for the fact that we had an addition to our team, Maximus’s baby sister Lilah. Lilah was 6 months at the time of his second surgery. That made things a little more difficult. However, Dr. Hammel and the Children’s Hospital staff was able to perform another successful surgery. We were back on track; however, over the next two days Maximus was not responding like he normally did. Come to find out that a few of the stitches had broken and they had to go back and do another surgery to fix it. All went well and one week later our little boy was returning to normal and we were ready to live a healthy life! Ignorance is bliss.

After the surgeries, we were having echos every month to monitor the recovery. We eventually were able to start having echos three months at a time. In our late August check up we had another setback. Our P.A. let us know that they were going to do an emergency surgery, as Maximus had developed an aneurysm in his heart and they had to go in and fix it. We were thrust into panic mode, however it was very different not being able to plan for it or to get everything in order. It was almost better because by the end of the night it was already done. We were just very thankful to have family and friends to help and support. A week and a half later we were returning to normal.

On August 24th, 2016 it will be two years since Maximus has had heart surgery and we are finally to the point where we are having an echo once a year. The journey has been long and it has been very tough. However, the journey is not done. At some point Maximus (barring any technological advances in medicine) will need another surgery, as his valve is still leaking. The question is when. Hopefully a long, long time from now!

I know Maximus is the Hero of our story, but we have had many sidekicks. From my beautiful wife, to our extended family, to friends and colleagues who have prayed and supported us during this time. The most amazing thing throughout this time is that you would never have guessed that Maximus is a heart baby. All of the nurses and doctors always mention how tall and heavy he is. They say that heart babies struggle sometimes to eat, but Maximus’ appetite takes after mine. I am very thankful to the Heart Heroes for what they do and Maximus loves his Heart Hero Cape. We have been to a few of the Christmas Parties now and it is great to hear so many of the stories. I know that ignorance can be bliss, however our family is stronger for the situations we have been through!