Hereditary Hemorrhagic Telangiectasia

An abnormal gene causes HHT. Most often, it is passed down (inherited) from 1 parent who has HHT. Each child of a parent with an HHT gene has a 50% chance of getting this gene from their parent.

HHT is a “dominant” disorder. This means it only takes 1 abnormal copy of the gene, from only 1 parent, to cause HHT.

• Few hospitals have our experience treating children with HHT.
• Our Vascular Anomalies team brings together experts with many different skills and experiences. Your child’s care team may include otolaryngologists; geneticists; neurosurgeons; interventional radiologists; plastic surgeons; and experts in the lungs (pulmonologists), skin (dermatologists) and eyes (ophthalmologists). We call in other specialists as needed.
• We also work with experts in psychology, social work, physical therapy, pain medicine and occupational therapy to meet your child’s needs.
• Our physician-scientists help set national standards for care of young people with vascular anomalies. We provide the most advanced treatments in our region.

• A correct diagnosis is the first step toward improving your child's condition. We have the expertise to accurately diagnose your child and decide the best treatment.
• Seattle Children’s is 1 of only a few centers in the United States that can do genetic testing for HHT. We also use a broad range of imaging studies to confirm your child’s diagnosis.
• For children who need surgery to remove abnormal veins in the face, we use facial nerve mapping to greatly reduce the risk of nerve injury and scarring. Read how nerve mapping gave Emma better treatment options.
• Learn about vascular anomalies research at Seattle Children’s.

• We schedule visits so your child sees all the specialists they need in as few days as possible. In some cases, we can consult via video phone calls with doctors or patients.
• Your child’s team will work together — and with you — to make a treatment plan that fits your child’s unique needs. Combining our skills helps make sure your child gets the very best care.
• As long as needed, our team keeps a watch on your child’s condition. We are always here to answer your questions and connect you to community resources.

• Children do not react to illness, injury, pain and medicine in the same way as adults. They need – and deserve – care designed just for them. Our experts focus on how treatments today affect growing bodies in the future. We provide the best and safest treatment for your child, based on our years of experience and the newest research.
• At Seattle Children's, we work with many children and families from around the Northwest and beyond. Whether you live nearby or far away, we can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

Your child’s symptoms may change over time, or they may develop new symptoms. We watch your child closely with regular follow-ups. This helps ensure your child gets the care they need before more serious problems happen.

How often we see your child depends on their symptoms. Some children need regular imaging studies to check their lungs or brain.

After we have fully assessed your child, we follow up every few months. Once our team has a better understanding of your child’s symptoms and they have improved or stabilized, we follow up once a year. 

Nosebleeds are very common in children with HHT. To reduce or prevent nosebleeds we may:

• Give your child medicine to reduce bleeding. Your child may need medicine to keep the inside of their nose moist or to help their blood clot.
• Close off the bleeding vessel by heat, laser or a chemical called silver nitrate. These procedures are called cauterization.

See tips for homecare of nosebleeds and how to tell if your child needs medical care right away.

• Call 911 if your child passes out, is too weak to stand or you think it’s an emergency.
• Seek medical care if the nosebleed does not stop after 10 minutes of pinching the lower nose or if your child has lost a lot of blood.

Laser therapy is often the best choice for telangiectasias of the nose or skin. It uses light energy to quickly destroy the extra blood vessels. The type of light beam we use depends on the abnormal vessels.

Most patients say the laser feels like a brief sting (like an elastic band snapping against the skin). We treat children with smaller growths in the clinic after using a cream to numb their skin. Children with larger clusters of abnormal vessels often need to be treated in the operating room under general anesthesia. We will talk with you to decide the best choice for your child.

Outpatient laser surgery is done at our Seattle hospital campus, Bellevue Clinic and Surgery Center and North Clinic in Everett. We do laser treatments that need general anesthesia at our Bellevue center or Seattle hospital campus.

AVMs in the lungs are at risk of bursting and bleeding. Someone with a large lung AVM is at high risk for stroke because clots may form, break free and block blood vessels in the brain.

To treat AVMs in the lungs, we use embolization and, rarely, surgery. In embolization, an interventional radiologist puts a small tube (catheter) into a blood vessel and threads it to the target area.  Very small coils or plugs are injected into the abnormal blood vessel to block blood flow.

Bleeding from the stomach or intestines may cause your child to have a very low level of red blood cells (anemia). Your child may need iron supplements.

AVMs in the brain can be life-threatening or disabling if they bleed. Proper diagnosis and screening are essential.

The right treatment depends on the AVM’s size, structure and location. Your child may need surgery, embolization or stereotactic radiosurgery, alone or together.

Read about treating AVMs and other vascular diseases of the brain.