Pediatric Marfan Program

About Our Program

The Pediatric Marfan Program at NewYork-Presbyterian Morgan Stanley Children’s Hospital provides comprehensive and coordinated care for children with Marfan syndrome and other connective tissue disorders.  We are recognized as an official pediatric Marfan center by the Marfan Foundation, and we are one of the few comprehensive Marfan centers in the New York area. We take an individualized approach to diagnosis and management, developing a plan of care for each child based on his or her particular needs.  Throughout NewYork-Presbyterian, we offer children and their families seamless access to our vast network of pediatric experts, services and resources.

How We Diagnose Marfan Syndrome

If your child is suspected to have Marfan syndrome, he or she will undergo a complete a series of diagnostic tests that may include:

• Electrocardiogram (ECG or EKG): records the electrical activity of the heart to detect abnormal rhythms (arrhythmias or dysrhythmias)
• Echocardiography (echo): evaluates the structure and function of the heart
• Eye examination: looks at the interior of the eye using a device called a slit lamp
• Magnetic resonance imaging (MRI) or computerized tomography (CT): produces images of internal tissues, bones, and organs
• Genetic testing: useful when there is a family history of Marfan syndrome or when other tests are not conclusive. Genetic testing alone cannot diagnose Marfan syndrome.

How We Manage Marfan Syndrome from a Cardiac Standpoint

If your child is diagnosed with Marfan syndrome, a pediatric cardiologist will conduct a cardiac evaluation. Your child may be referred to other specialists in our program for evaluation. Because Marfan is an inherited disorder, we may also recommend genetic counseling to confirm the diagnosis and to give all family members information about the disorders.
Following these initial evaluations, our team will work with your family to create a treatment plan that addresses your child's specific needs.  Treatment for Marfan depends on which parts of the body are affected and may include:

Monitoring

A child with mild symptoms may not need immediate treatment or intervention. We 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

Medications are prescribed 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 are believed to reduce the risk of complications of the aorta.

Lifestyle Changes

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

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; aortic valve disease, which happens when the heart's valves do not close properly; and mitral valve prolapse, in which the mitral valve does not close properly. Severe aortic and mitral valve complications sometimes require surgery.