The Marfan Blog

Steve Henry - My Marfan Story

Posted by Steve Henry

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Nov 4, 2015

Many people with Marfan syndrome and related disorders find strength from their faith. It helps them cope with medical situations and with their daily life. Here’s Steve Henry’s story.

I was diagnosed with Marfan syndrome after a relative told my father about a boy they knew who had many similar physical features as I did. She strongly encouraged us to go to a specialist due to its possible heart risks. So at the age of twelve, in 1990, our family headed to Children’s Hospital in Pittsburgh for genetic testing.

After the tests, which were then mostly hands on tests, I was told that I was a “Freak Mutation.” My family was told much more than that, but as a 12-year-old, that is all I heard. There was no evidence that I had inherited Marfan syndrome, so it was classified a spontaneous mutation. But the specialist used the word “freak” and that is how I then saw myself for much of my teenage life.

My mom was my greatest support and strength after being diagnosed. We were a church going family and I did enjoy attending, but I didn’t look much into “church” or “God” for my support. I had my mother and she was my rock. Sadly, only a few years after being diagnosed with Marfan syndrome, my mother lost her second bout with cancer and died in the summer of 1993. I was only 15 and she was only 47.

I was at a loss. People would tell me that God loves me and that He will take care of me, but that didn’t help. Those words didn’t stop the pain or bring my mother back. I felt very alone as I still believed I was some type of “freak” and my strongest earthly anchor was gone.

Those years after my mom died were tough, but my dad worked hard to take care of the family. After a couple years, my father remarried and I have had a wonderful step-mother ever since.

In high school I was never allowed to play sports because of Marfan, but I did everything else I shouldn’t have -- three-on-three tournaments, the biggest roller coasters, and even bungee jumping. By the summer after my high school graduation, my aortic valve and root were in need of surgery.

Open heart surgery as an 18-year-old wasn’t too bad. I left for college in Kentucky three weeks after surgery. After my first semester, I went back to the surgeon for a post-op visit. He informed me that I had fluid around my heart and it needed to be removed. It’s called a pericardial effusion. They removed nearly three liters of fluid that evening. Medically speaking, I should have been dead. That pressure should have been too great for even a healthy heart. Looking back, I definitely attribute my survival to a miracle.

During my junior year of college, I started dating Amanda who would become my wife two weeks after graduating from Kentucky Mountain Bible College. Unlike my teenage years, during my time in college I truly did get my life right with God. Because of that I could accept the condition I had and also knew that God is greater than my affliction and had a plan for my life.

My wife and I actually left the country seven months after we were married to be missionaries in Papua New Guinea helping to start a Christian radio Network: Wantok Radio Light. Our first child, a girl, was also born in Papua New Guinea.

After one year halfway around the world, we came home for Christmas for my yearly exam. It was then found that I had an AAA (abdominal aortic aneurysm). Therefore, international travel was forbidden and I had a procedure in early 2003. Recovery after the AAA was long and hard. I wanted to give up so many times, and even wanted to die, but Amanda and my faith would carry me when I didn’t have the strength to.

Working a couple other ministry related jobs, I then found myself in the pastorate in 2006. I made sure the church knew before I was hired about my medical concerns. I made it clear that you never know what might happen. They still felt strongly, as did I, that this is where we were meant to be.

It was only three years later that I ended up having another AAA surgery. Thankfully, the recovery wasn’t nearly as difficult as the first one, although the scars of those two AAA surgeries are impossible to hide if I have my shirt off.

The scariest moment for our family regarding Marfan syndrome was in December 2010. We now had five children, two of them with Marfan syndrome. That December day, before church, I was pushing snow (my wife says shoveling, but I think it was only pushing) and one of the leaflets in my aortic valve tore. The homograph that was put in when I was 18 had torn.

As I was sitting on the couch waiting for the ambulance, struggling to catch my breath, I remember my oldest, then only 8 years old, running back to her bedroom sobbing, not knowing if I was dying. By God’s grace, I was able to make it to Allegheny General Hospital in Pittsburgh and, by mid-afternoon, I was stabilized. It wasn’t until Thursday of that week that I had a St. Jude’s valve grafted in. Ten days later, I was heading back home, over a week sooner than the surgeon’s target release date.

Two months later, I was back full time at the church. The church took such good care of us during my time down. Food, finances, and friendships overflowed from the community. We were blessed by the love we were shown by so many.

Although my family’s life has been greatly affected by Marfan syndrome and it will continue to be for years to come, I wouldn’t trade it for anything. Is it hard some days or even for extended seasons in one’s life? You bet it can be. Life with Marfan syndrome isn’t easy, but it is who I am..

I have been able to relate to hurting people more because I know what it is like to hurt physically, emotionally, and spiritually. I believe it has also helped me to be a better pastor as it makes me always remember that my strength comes from God.

My heart’s desire is that, through my story, I can have some part in helping to bring hope to anyone who feels hopeless. We all have scars in our lives. They are unique to each of us. They are custom to us. Regardless of the scars you have in your life, I want you to know that they don’t have to control you. You are special just the way you are. I am so glad that I have Marfan syndrome and I wouldn’t change a single experience of my life because it has positively shaped me into the man, husband, and father that I am today.

Steve is a pastor in NW Pennsylvania and the father of five children, two with Marfan syndrome. He speaks yearly to medical students about Marfan syndrome and how one can still have hope in the midst of this condition. He’s also written a manuscript, Custom Scars, that is currently being considered for publication where he addresses Marfan syndrome, hope, and faith.

Topics: Living Successfully, Quality of Life

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