Marfan Treatment at Columbia


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There is no cure for Marfan syndrome; however, with a proper diagnosis, treatment, and monitoring, your child can live a long, full life.

After a full evaluation, our physicians will collaborate on a plan for your child's treatment that addresses the symptoms he or she is currently exhibiting. Treatment may include:

  • Monitoring
  • Medication
  • Lifestyle changes
  • Surgery

The most serious complications of Marfan syndrome involve the aorta, which is the main vessel that carries blood from the heart to the rest of the body. Regular monitoring by a cardiologist to evaluate aortic size will be part of your child's treatment throughout his or her life.

Learn more about our pediatric Marfan syndrome program. 

Monitoring

A child with mild symptoms may not need immediate treatment or intervention. Your Columbia physicians may recommend regular monitoring instead, to watch for any changes that occur over time. Monitoring will likely include diagnostic imaging tests, such as MRI or CT scans of the body and heart, or echocardiograms to look for changes in the heart and aorta. 

Medication

Your child's physician may prescribe medications to slow the progression of aortic issues. Medications may include beta blockers, which lower blood pressure, and angiotensin receptor blockers, which relax blood vessels. Both medications reduce the risk of complications of the aorta.

Lifestyle Changes

With some lifestyle guidelines, children with Marfan syndrome can lead healthy, active lives. Your physician will discuss appropriate diet and exercise guidelines with you and your child.

Some children with Marfan syndrome have ectopia lentis, which is a dislocation of lens and which can lead to nearsightedness and astigmatism (irregularly curved eye). Our ophthalmologist may prescribe eyeglasses or contact lenses to correct vision issues.

Irregular bone formation is also sometimes a symptom of Marfan syndrome and can lead to a curved spine of other bone malformations. With an early diagnosis, our orthopedist can correct or help bone formation issues with a brace. 

Surgery

Severe complications of the aorta caused by Marfan syndrome include aortic dissection, which is a tear in the aortic wall; aortic aneurysm, a bulging or rupturing of the aortic wall; and aortic valve disease, which happens when the heart's valves do not close properly. Severe aortic complications sometimes require surgery. Columbia's Pediatric Marfan Program is associated with Columbia's Congenital Heart Center and NewYork-Presbyterian Morgan Stanley Children's Hospital, which has the highest survival rate in New York State for pediatric heart surgery and one of the highest in the United States.

Find out more about the symptoms and diagnosis of pediatric Marfan syndrome.