Treatments for marfan syndrome in children

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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.

How do you treat Marfan syndrome?

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.

  • Depending on the severity of your child's condition, she may need surgery to replace the enlarged segment of her aorta. She may also (or instead) need surgery to repair her mitral valve if it isn't functioning normally.
  • Medication, including beta blockers, may be an option to lower her blood pressure and reduce stress on her aorta when surgery isn't necessary.

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.

Will my child's activities be restricted after treatment?

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.

How should we manage her condition going forward?

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:

  • an annual echocardiogram (cardiac ultrasound) (to monitor the heart and aorta)
  • a periodic eye examination by an ophthalmologist
  • monitoring of the skeletal system for abnormalities
  • lifestyle adjustments (to reduce the risk of injury to the aorta)

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.

As she grows: your child's long-term outlook

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.

Coping and support

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:

  • getting to Boston Children's
  • accommodations
  • navigating the hospital experience
  • resources that are available for your family

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:

  • patient education: From the first office visit to treatment and recovery, our staff will be on hand to walk you through your child's treatment and help answer any questions you may have—Will my child need surgery? What will her recovery be like? We'll also reach out to you by phone, continuing the care and support you received while at Children's.
  • parent-to-parent: Want to talk with someone whose child has been diagnosed with Marfan syndrome? We can often put you in touch with other families who've been through the same experience that you and your child are facing.
  • support groups: Boston Children's is actively involved with the National Marfan Foundation, which provides research, education and support services to families and children with Marfan syndrome.
  • faith-based support: If you and your family need spiritual support, we can connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy representing Protestant, Jewish, Muslim, Roman Catholic and other faith traditions, who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.
  • social work and mental health professionals: Our social workers and mental health clinicians have helped many families in your situation. We can offer counseling and help with issues such as: 
    • coping with your child's diagnosis
    • stresses relating to illness in the family
    • dealing with financial difficulties
  • help for adult Marfan patients: As your child reaches adulthood, you'll want her to know that Children's offers help to adults who have Marfan syndrome. Many adults who were patients as babies or children continue to be monitored by the Boston Children's clinicians who've followed them since childhood, so we've developed a special expertise in managing Marfan syndrome across the lifespan.
If you're an adult who has Marfan syndrome—even if you weren't treated at Boston Children's as a child—and you'd like to know more, contact our Cardiovascular Genetics Program at 617-355-8794, or email us at

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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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