Cardiac Genetics Program
What is the Cardiac Genetics Program?
The Cardiac Genetics Program serves children with genetic conditions that increase the risk for serious blood vessel problems. These conditions may make the wall of the aorta bulge outward (thoracic aortic aneurysm) and cause layers of the aorta to tear and pull apart (aortic dissection). They include:
- Ehlers-Danlos syndrome, vascular type (not hypermobility type) and some other rare types
- Familial thoracic aortic aneurysm conditions
- Loeys-Dietz syndrome
- Marfan syndrome
- Other genetic conditions associated with aortic aneurysm
Experts in the Cardiac Genetics Program diagnose and manage these conditions and other conditions like them. We work closely with you and the rest of your child’s healthcare team to prevent, watch for and treat any health problems.
What’s special about the experience at Seattle Children’s?
Team-based care from pediatric experts
- Seattle Children’s has pediatric cardiologists who specialize in conditions, like connective tissue disorders, that put children at risk for thoracic aortic aneurysm and dissection.
- Each child is different. The heart doctors and genetic nurse practitioner in the Cardiac Genetics Program work together to design and provide care to fit your child’s needs.
- Our genetic counselor offers information and guidance about your child’s condition. They can help if your family may be at risk for a condition that can be passed from parents to children through genes.
- Based on your child’s health, we connect you with other Seattle Children’s specialists — from areas like heart surgery, pediatric general surgery, orthopedics, ophthalmology, craniofacial and sleep medicine. We take care of the referrals so your child’s care is well coordinated and easier on you.
Support for your whole family
- Whatever types of care your child needs, we will help your family through this experience. We will discuss your child’s condition and treatment options in ways you understand and involve you in every decision.
- Seattle Children’s sponsors activities like regional symposiums on vascular Ehlers-Danlos syndrome (VEDS), Loeys-Dietz syndrome (LDS) and Marfan syndrome. We’re also a sponsor of the Pacific Northwest Walk for Victory. Walk for Victory is the Marfan Foundation’s global walk program that brings together communities affected by Marfan, VEDS, LDS and related conditions. Ask your care team to learn more about how you can get involved.
- Our Child Life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age.
- Seattle Children’s has many resources, from financial to spiritual, to support your child and your family and make your experience as smooth as possible.
- Read more about the supportive care we offer.
Research to advance care
- Genetics is one of the fastest-changing areas in medicine. Pediatric specialists and researchers at Seattle Children’s and the University of Washington are studying the role genes play in how the heart and blood vessels develop.
- Our goals are to learn more about the risks families face, to prevent heart and blood vessel problems in more children and to provide the best possible treatment.
- Dr. Luciana Young is leading a study to learn if children with Marfan syndrome have facial features that raise the risk of breathing problems during sleep.
The Cardiac Genetics Program provides:
- Tests, cardiac and aortic imaging and exams to diagnose genetic conditions, like connective tissue disorders, that put children at risk for thoracic aortic aneurysm and dissection
- Genetic counseling to:
- Explain your child’s condition
- Discuss whether other family members or your future children might be affected
- Talk about the option of genetic testing and what any test results mean
- Offer support and resources to help your family cope and get the right care
- Medicines to manage your child’s condition and help prevent future health problems
- Regular visits throughout childhood and up to age 21 to check your child’s health on a schedule tailored to them
- Referrals to a wide range of other Seattle Children’s clinics and programs, if needed, so your child gets complete, coordinated care
- Seamless transition to adult specialists at UW Medicine Heart Institute as your child reaches adult age
We often care for children who were the first in their family to be diagnosed with a genetic condition that affects the heart or blood vessels. Sometimes, this leads their parents or other family members to be checked and to find out they have the same condition. We offer evaluations for children, such as siblings of a child who has already been diagnosed. If an adult in your family may be at risk, we can connect you with adult care at the UW Medicine Cardiovascular Genetics Clinic (PDF).
Scheduling an Appointment With the Cardiac Genetics Program
- If you would like an appointment with the Cardiac Genetics Program, call the Heart Center at 206-987-2515 or ask your child’s primary care provider for a referral.
- How to schedule an appointment at Seattle Children’s.
- If you already have an appointment, learn more about how to prepare.
- Learn about Heart Center resources such as useful links, videos and recommended reading for you and your family.
Who's on the team?
The Cardiac Genetics team includes cardiologists, a genetic nurse practitioner and genetic counselors to provide care for your child and to help advise your family.
Providers, see how to refer a patient.