What is Marfan syndrome?
Marfan syndrome is a genetic disorder that affects the connective tissue, including the blood vessels of the heart and the heart valves.
Connective tissue gives strength and support to many parts of the body. Besides the blood vessels and heart valves, the tendons, ligaments and cartilage are all examples of connective tissue.
In Marfan syndrome, the connective tissue isn't normal. As a result, certain body parts aren't as strong as they should be. This can cause a range of symptoms from very mild to severe and life threatening.
Heart problems are usually the most serious problems in children with Marfan syndrome. The walls of their major arteries tend to be weak. Often, their aorta is affected. If it is, the aorta gets bigger. This weakens the inner wall of the aorta.
A weak inner aortic wall can result in an aneurysm (pronounced AN-yer-iz-em), an area where the wall bulges outward.
A weak inner aortic wall can also tear. Then blood can leak through the tears and separate the layers of the aorta. This problem is called aortic dissection.
Marfan Syndrome in Children
Marfan syndrome is a genetic condition. Children who have Marfan are born with it.
Children either inherit it from one of their parents, or it is caused by a genetic change that happened in the child and wasn’t passed down from a parent. It's important to identify which kind your child has, since this can make a difference in how your doctor treats the condition.
If the condition was inherited, it may also affect one of the child's parents or their brothers and sisters.
Marfan syndrome affects about 1 in every 5,000 people.
Marfan Syndrome at Seattle Children’s
Our heart team has treated many children with Marfan syndrome. We have extensive experience with the treatment these patients may require, including surgery in some cases. Our Cardiac Genetics Program combines the expertise of cardiology, medical genetics and genetic counseling. We also have a pediatric cardiac anesthesia team and a cardiac intensive care unit ready to care for children who undergo heart surgery.
When you come to Children's, a team of people will take care of your child. Along with your child's heart doctor (cardiologist), you are connected with newborn specialists (neonatologists), lung doctors (pulmonologists), nurses, child life specialists, social workers and others, if their expertise is needed. We work together to meet all of your child's health needs and help your family through this experience.
Seattle Children's has been treating children since 1907. Our team members are trained in their fields and in meeting the unique needs of children. For example, the doctors who give your child anesthesia (sedation) are board certified in pediatric anesthesiology. This means they have extra years of training in how to take care of kids. Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age.
The Adult Congenital Heart Disease Program shared by Children’s and the University of Washington can help with care throughout your child’s life.
Contact the Heart Center at 206-987-2015 for a cardiac referral, a second opinion or more information..