Venous Malformations

Most VMs happen because of genetic changes (called mutations or variants). Most often, the mutation is in the TIE2 or PIK3CA gene. The mutation starts in 1 cell. Any cells that divide from that cell will have the mutation. This is called a mosaic mutation.

Sometimes a mutation that causes VMs is passed down from parents to their children (inherited). But most of the time, this is not the case. Instead, the child has a new mutation that neither of their parents had. The mutation is only in cells in and around the VM and not in cells anywhere else in the child’s body.

A rare condition called blue rubber bleb nevus syndrome causes VMs throughout the body.

We may check your child at regular follow-up visits or ask you to schedule a visit if your child’s symptoms change. We talk with you about the best way to track your child’s VM, which may include imaging studies. Treatment options may change as your child’s VM changes.

Some children take blood-thinning medicines (oral anticoagulants) to treat VM symptoms. These medicines can help kids feel better and be more active by decreasing pain and blood clots caused by slow blood flow within VMs.

Sirolimus is another medicine that can help decrease symptoms from VMs.

Many VMs are caused by changes in genes in a biological pathway called PIK3CA/AKT/mTOR. Medicines that target this pathway can help reduce symptoms, like pain and swelling.

Some children wear special tight-fitting clothes, like a compression stocking, glove or sleeve, to reduce symptoms from a VM on an arm or leg. Your child’s care team may recommend products you can buy over the counter or garments custom-made for your child by our occupational therapist.

Compression garments do not cure VMs, but can help with pain and mobility.

Read more about Compression Garments: Wear and Care (PDF).

Laser therapy uses light energy to quickly destroy the extra blood vessels. The type of light beam we use depends on the type of malformation.

Laser treatment often makes the color of the skin over the VM look more like your child’s usual skin tone. But it does not remove or reduce a mass or bump. Your child may need more than 1 laser treatment.

Most patients say the laser feels like a brief sting (like an elastic band snapping against the skin). Sometimes, we use a cream to numb your child’s skin first. We may need to treat your child while they are completely asleep (under general anesthesia) in the operating room. It depends on the size, location and number of VMs.

We do laser surgery while your child is awake (outpatient) at our Seattle hospital campus, Bellevue Clinic and Surgery Center and North Clinic in Everett. We do laser treatments that need general anesthesia (inpatient) at our Bellevue center or Seattle hospital campus.

Sclerotherapy (SCLAIR-oh-THAIR-uh-pee) can:

• Ease pain
• Reduce the size of a VM by up to 80%
• Reduce the purplish, bluish or dark color

It does not remove the VM.

First, a doctor trained in imaging (interventional radiologist) uses ultrasound to find the extra veins. Then, they inject a medicine into the VM to make it shrink. They do not make any cuts (incisions). Your child will be completely asleep (under general anesthesia).

Some children need this treatment several times to make their VM small enough to reduce pain and prevent problems in the affected area. Sometimes the vessels get bigger again, and we need to repeat the treatment later. 

Read more about sclerotherapy (PDF).

Sometimes surgery to remove or reduce the size of the VM is the best option. We consider surgery based on your family’s wishes and if the VM:

• Causes symptoms, like pain or bleeding
• Makes it hard to see, breathe, move or do other important functions
• Affects your child’s appearance

Surgery may not be possible if the VM is widespread or surrounds important body parts and organs. Sometimes we can only remove part of a VM.

Often, we use glue embolization surgery (GES) to safely remove or reduce VMs.

Seattle Children’s pioneered GES, in which we use medical-grade Super Glue to remove the tangle of extra veins in a single surgery. Before this, many children with VMs endured repeated painful injections or multiple surgeries. We are still among only a few treatment centers in the country to offer this option.

At Seattle Children’s, GES is an option for children with VMs in many parts of the body.

• Before the surgery, we give your child medicine, so they sleep without pain (general anesthesia). For VMs in the arms or legs, we may also use regional anesthesia (nerve blocks) to improve pain control and reduce the need for narcotic pain medicines.
• Watching on screens that show your child’s VM in real time, an interventional radiologist places the needle in exactly the right spot. This makes sure we inject the glue only in the extra veins.
• The glue hardens the VM without harming the tissue around it.
• Guided by imaging that shows where the glue is, surgeons remove the VM with the glue inside. They do this right after the interventional radiology procedure while your child is still under anesthesia.

For children who need surgery to remove a facial VM, we use nerve mapping to make the procedure safer. This greatly reduces the risk of nerve injury and scarring. Before surgery, we use small electric pulses to pinpoint the facial nerves. During the surgery, real-time feedback about nerve activity helps guide surgeons. The technique means shorter surgery time, with smaller cuts and near-zero risk of nerve injury.

For some children, genetic testing helps doctors find the exact cause of their VM. Such a precise diagnosis may expand treatment options to include drugs that target the biological pathway causing the VM. If this is the case for your child, our doctors will talk with you about the options and any research studies (clinical trials) that might be a good match.

• We have treated hundreds of children for VMs. Doctors with less experience might confuse a VM with a tumor or another type of vascular anomaly, leading to the wrong treatment.
• Our Vascular Anomalies team brings together experts with many different skills and experiences. These include otolaryngologists, hematologists, dermatologists, plastic surgeons, neurosurgeons, general surgeons, ophthalmologists, orthopedic surgeons, geneticists and interventional radiologists.
• Our physician-scientists help set national standards for care of young people with vascular anomalies. We provide the most advanced treatments in our region.
• If your child has a VM in the middle of their head, they will get care from our Cranial Base Program. The multidisciplinary team has the skill and experience to figure out the safest and most effective way to treat your child’s lesion with the lowest risk.

• A correct diagnosis is the first step toward improving your child's condition. We have the expertise to accurately diagnose your child’s VM. To confirm it, if needed, we have a broad range of options, such as genetic testing and imaging studies. We will work with you to decide the best treatment option for your child.
• Our physicians have created a test, called VANSeq, that sequences a panel of genes known to cause vascular anomalies. VANSeq is used to check patients’ tissue and certain body fluids for the genetic changes. Because of our laboratory’s expertise, doctors around the world are using VANSeq to help make treatment decisions.
• The gene panel helps us find the exact genetic cause of a VM in some children. A precise diagnosis may expand your child’s treatment options to include medicines that target the biological pathway causing the VM. These targeted therapies may be newly developed or already approved for other diseases.
• Our genetic testing expertise helps us create new therapies that we offer in research studies called clinical trials.
• Learn more about vascular anomalies research at Seattle Children’s.

• Having a child with a VM can be stressful for the whole family. From the first visit to follow-up, our team will work to give your child seamless care and make your family’s experience as easy on you as we can.
• Seattle Children’s supports your family with a range of resources. Our Child Life specialists, Family Resource Center and Guest Services are here to help.
• If your child needs anesthesia as part of their treatment, the doctors and nurses on our anesthesiology team have special training in giving anesthesia to children. Our main goal is to ensure your child’s safety and comfort.
• Our interventional radiologists are dedicated to providing care for young people. They have special pediatric training and use equipment and techniques designed for children and teens. 

• 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.