Pediatric Dilated Aorta Caused by Connective Tissue Disorders Program

Coordinated, comprehensive care

A dilated aorta can affect your child’s body in many ways. Children with dilated aortas caused by a connective tissue disorder may need to see an eye doctor, dentist, orthopedic specialist and/or surgeon. Keeping track of all the specialists and appointments can be overwhelming and time consuming. We’re here to help.

Our team will handle all the referrals your child needs and set up all their appointments. Plus, we keep track of the reports from each appointment and talk to all your doctors directly about your child’s treatment plan. We see the whole picture of your child’s health.

Fast treatment for serious complications

A dilated aorta is something your child is born with. It can get worse over time. The earlier your child receives treatment, the more likely they are to avoid complications – and to live a healthier, fuller life. Your child’s first visit with a cardiologist will be a detailed, thorough, one-hour appointment. Here’s what you can expect:

• Physical exam, where we’ll ask you about your child’s medical history and your family’s medical history.

• Echocardiogram, which is an ultrasound of the heart where we can see the aorta.

• MRI or CT scan, that takes a detailed image of the entire aorta, which helps us monitor for areas of dilation.

• Genetic testing, which can identify changes (also called variants) in your child's chromosomes that may have caused the dilated aorta.

Compassionate counseling and support

If your child has a dilated aorta caused by a connective tissue disorder, they will need to see several doctors throughout their life for therapy, testing and treatment. These conditions are very rare and you might feel isolated and not know where to turn for help. Our social workers and psychologists are here to support you and your child. We can help your family come to terms with your child’s condition and to plan for a life filled with meaning.

Resources

• Loeys-Dietz Syndrome Foundation

• The Marfan Foundation

A dilated (or expanded) aorta can be a life-changing diagnosis for your child and family. Children with these conditions often face a variety of health challenges and need specialized treatment throughout their life.

The aorta is the main blood vessel that carries oxygen-rich blood from the heart to the body. Dilated aortas can be caused by genetic conditions and by certain types of congenital heart disease. If the aorta becomes too dilated the walls of this blood vessel can tear.

We have special expertise in treating dilated aortas related to genetic diseases that cause connective tissue disorders. These include Marfan syndrome, Loeys-Dietz syndrome, Turner syndrome and Ehlers-Danlos syndrome. Our connective tissues are responsible for keeping the structure and form of our organs and body. Tendons, ligaments, bones and fat are all considered connective tissue. In these conditions the aorta dilates because of weakness in the walls.

Children's Health℠ also treats dilated aortas caused by other conditions, like bicuspid aortic valve, aortic coarctation and other cardiac conditions.

Figuring out why your child’s aorta is dilated is the first step in finding the right treatment. Then, we create a comprehensive care plan that meets your child’s needs. Our goal is to prevent future complications and help your child live a full, healthy life – by harnessing the combined expertise of our team of cardiologists, geneticists, cardiac surgeons and other experts.