written by Tandi Rasmussen

I was three when my sister Shanna was born without an aortic valve and two holes in her heart. Her short life was spent mostly in the hospital until she passed away at three months old. Even though Shanna was physically gone her memory lived on in our household as I grew up. When I began to have children of my own I made sure to let my doctor know of Shanna’s heart defects to ensure that our children’s hearts would be checked for CHD. The ultra sounds of all three of our children looked good and we were elated to have healthy children (or so we thought).

When our youngest son Dylan was born in November 2005 he looked to be as healthy as our other children. But soon he began having upper repertory infections and pneumonia on a regular basis. We were literally in the clinic every few weeks and he was on steroids, antibiotics, and nebulizer treatments for the first few years of his life. At one of his all too often visits to the clinic for a repertory infection I sat and watched as the doctor listened to Dylan for what seemed to last forever and when he was done he asked me if anyone had ever mentioned him having a heart murmur. As I stared blankly at him I told him no never. He recommended that we go see a pediatric cardiologist right away. When we met with Dr. Martin a week later in March 2009 she couldn’t believe we had not been referred to her before, as Dylan’s murmur was very significant. She explained to us that Dylan had a bicuspid aortic valve with regurgitation and he would need surgery at some point to fix it. She was very clear that it was not a matter of if but a matter of when he would have surgery.

We spent the next couple years diligently going to checkups for Dylan and everything remained stable until his appointment in November 2011. The echo tech seemed to be looking more intensely than she had at his previous appointments and I knew something was different this time. When Dr. Martin came in with the results my fears were confirmed – his heart was no longer stable. The regurgitation had gone from mild/moderate to moderate/severe and his left ventricle had become enlarged. They put Dylan on an ace inhibitor to try and relieve the pressure on his heart and planned to recheck him in 6 months.

We went to Children’s in May of 2012 for an MRI of his heart which showed medicine had done nothing for his heart at all. So in June we met with the surgeon to schedule a time for Dylan’s open heart surgery to repair his aortic valve. We were so caught up in all the fears and emotions that go along with having a young child go through open heart surgery that we didn’t realize the significance of the date we set for his surgery – July 13, 2012.

The day of surgery came and we tearfully handed our son over to the surgical team and waited for what seemed like eternity. When Dr. Hammel came out to talk to us he said the surgery went well and that in addition to Dylan’s bicuspid aortic valve he also found a very large hole in one of the cusps that was big enough he could fit his pinky finger in so he repaired the valve and the cusp.

The next day sitting in the PICU with Dylan and my parents and they asked me if I knew what the day of his surgery was. My mom told us that as Dylan was having his open heart surgery it was 31 years to the day and nearly the same hour that my little sister Shanna had lost her battle with CHD – July 13, 1981. I felt terrible and apologized to my mom and dad and they said not to apologize they knew how stressful the situation was and now July 13 has a new meaning to them.

I know that my sister was there that day watching over our son, guiding the doctors and protecting our Heart Hero. July 13th means a lot to my family, it is a day for celebration for Dylan’s successful surgery and a day of remembrance for my sister Shanna. Our amazing Heart Hero is doing great since his surgery but his journey is far from over as he will eventually have his aortic valve replaced. But we know he will be in good hands and he has is very own Heart Angel that will always be watching over him.