I've discovered that most of the time, my life with a chronic disease can be
much like everyone else's. I am 41 years old. I am a father, husband, uncle,
nephew, and son. I am an ex-cop. And, to either the bemusement or bewilderment
of my friends and family, I am a former professional wrestler-the raucous,
fake, TV kind. I am a writer and the token male member on my office's women's
I am many things to many people. Most of all, I am a man with advanced heart
To protect their hearts, people with Marfan syndrome must limit contact sports and strenuous activity, as well as how much they lift, because lifting can strain the aorta. Most of us shouldn't lift more than 20 pounds.
Women are especially at risk for an enlarged aorta during pregnancy and a torn aorta during labor. Fortunately, my aorta hardly grew at all during both of my pregnancies, and I had a successful cesarean section both times.
I knew before I got pregnant that once my babies were born, I'd only be able to carry them until they were 20 pounds. I loved "wearing" them until they reached that weight, but toddlers want to be carried, too. I compromise by spending time sitting on the couch or floor so they can crawl into my lap. I also have a diaper station on the floor, so I don't have to lift them to change them.
Parenting With Marfan Syndrome
Like many people with Marfan syndrome, I find it painful to stand for long periods, and I also have some back problems, including scoliosis. When the pain gets bad, we have picnics on the floor so I don't have to lift my 3-year-old son, Miles, into a high chair.
We emphasize self-sufficiency with Miles. He gets in and out of the car by himself, for instance, and he used a stepladder to get in and out of his crib when I was pregnant with Julian, now 1.
I have had to handle far more than I imagined I could before I had children, including pain and fatigue, plus Julian has Marfan syndrome, too (a child has a 50% risk of inheriting the disorder if one parent has it). Some people have criticized us for deciding to have children, because of my high-risk pregnancies and the chance of passing on Marfan to my kids.