My WebMD: Living with Marfan Syndrome

How would you cope if you couldn't lift or carry your young children? Maya Brown-Zimmerman shares her story.

From the WebMD Archives

I've always known I wanted to have children, but my husband, Mark, and I did a lot of homework before we decided to try to get pregnant.

I have Marfan syndrome, a genetic disorder that affects the body's connective tissue. The biggest risk is an enlarged aorta (the major artery taking blood away from the heart). This can lead to an aneurysm (a bulge) or a dissection (a tear) in that artery.

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.

Continued

But Mark and I love both boys to pieces. We will find Julian the best doctors available and get him the best care possible. The National Marfan Foundation at www.marfan.org/marfan has been a lifeline for us, and I know NMF will play a huge role in my son's life as well.

We will be the very best parents we can be. As my husband says, "There are no perfect parents, just perfect love."

WebMD Magazine - Feature Reviewed by Louise Chang, MD on February 01, 2012

Sources

SOURCE:

Maya Brown-Zimmerman.

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