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It's natural to feel distressed when you learn that your child has Marfan syndrome, since this is a rare condition that can affect your child in a number of ways. But it may comfort you to know that your child and your family are in the right place—the dedicated specialists in the Cardiovascular Genetics Program at Boston Children's Hospital are incredibly well qualified to care for your child.
At Boston Children's, we have decades of experience treating kids with Marfan syndrome, and we specialize in innovative, family-centered care. From your first visit, you'll work with a team of clinicians that's committed to addressing all of your family's physical and emotional needs.
Marfan syndrome doesn't have a cure. But treatments can help delay or prevent complications, especially when they're started early—which is why early diagnosis is so important.
Marfan syndrome can affect many parts of your child's body, including her heart, bones and joints and eyes. The type of treatment your child receives depends on her signs, symptoms and related conditions.
Heart treatments. The most common and serious heart problem linked to Marfan syndrome is a condition called aortic dilation, in which the aorta becomes enlarged, stretched and weakened over time, causing an aortic aneurysm (a bulged out area of the weakened artery wall that can rupture) or aortic dissection (tear or leak). Patients from 6 months to 25 years of age are at the greatest risk. Aortic aneurysms and aortic dissections are very serious and can be life-threatening.
Bone and joint treatments. If your child has scoliosis—a common problem in children with Marfan syndrome—your doctor may suggest a brace or other device to prevent the condition from getting worse. Severe cases of scoliosis may require surgery.
Some kids who have Marfan syndrome need surgery to repair a chest that sinks in (concave) or, less often, sticks out (convex). Surgery to repair a concave chest is done to prevent the chest from pressing on the lungs and heart and is generally very successful.
Eye treatments. Marfan syndrome can lead to many eye problems, such as a dislocated lens, nearsightedness, early glaucoma (high pressure in the fluid of the eyes), early cataracts (clouding of an eye's lens) or detached retina.
Glasses or contact lenses can help with some of these problems, but sometimes surgery is needed—for example, if your child has a dislocated lens or cataracts. If she develops glaucoma, treatments could include eye drops, drugs, laser therapy and surgery.
While most children who are successfully treated in a timely fashion for Marfan syndrome will grow up to enjoy a normal life expectancy, there will be some restrictions on their activities.
Your child shouldn't play rigorous sports such as basketball, soccer or football, and shouldn't lift heavy objects. She can usually participate in sports and activities that are less demanding on the heart: Bowling, golf, skating and walking are great options. Your child's doctor can advise you if she should also take other precautions.
If your child has Marfan syndrome, she'll need regular check-ups with her cardiologist throughout her life to monitor her aorta and heart valves. Your doctor's recommendations for managing Marfan syndrome may include:
Genetic counseling is important for people who have Marfan syndrome and are planning to have a family. If one parent has the disorder, there's a 50 percent chance for each child to also have Marfan syndrome.
Women who have Marfan syndrome have significant risks to their health during pregnancy, since pregnancy puts added stress on the mother's heart. Marfan patients are often cautioned against pregnancy to reduce the risk of injury to the aorta.
Surgical and non-surgical techniques for treating Marfan syndrome are continually being refined, with long-term outcomes constantly improving. Still, Marfan patients will need lifelong monitoring and possibly medication, since they'll always be at some risk for infections and other heart problems.
Most people who've had congenital heart disease will have an ongoing relationship with their cardiologist. Your child's cardiologist will help you create a long-term care program as she matures into the teen years and adulthood. Children's Cardiology Department can help prevent and treat complications, and will advise you on daily-life issues such as activity levels, nutrition and precautions related to pregnancy.
Shock, guilt, sadness, anger—all are natural reactions when your child has been diagnosed with Marfan syndrome. It's normal to go through a range of emotions. Fortunately, there's a lot of help available to you.
At Boston Children's, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit The Center for Families for all you need to know about:
In particular, we understand that you'll have a lot of questions if your child is diagnosed with Marfan syndrome. How will it affect my child long term? What do we do next? We can connect you with a number of resources to help you and your family through this difficult time, including:
Designed by Boston Children's psychiatrist-in-chief David DeMaso, MD, and members of his team, the Experience Journal is an online collection of thoughts, reflections and advice from kids, parents and other caregivers about a variety of medical experiences.
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We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”