Conditions

Venous Malformations

What is a venous malformation (VM)?

Venous malformations (VMs) are clusters of veins that are full of blood but are not used by the body. These abnormally formed veins are present at birth (congenital), but sometimes we do not see them until later. They grow slowly as your child grows. A rare condition called blue rubber bleb nevus syndrome causes VMs throughout the body.

Venous malformation

Venous malformations in the hand.

  • 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 continue the mutation. This is called a mosaic mutation.

Venous Malformations at Seattle Children's

Consistently ranked one of the nation's best children’s hospitals by U.S. News and World Report.Our Vascular Anomalies Program is nationally known for treating children with VMs and other vascular disorders. We are 1 of the largest and most experienced programs in the United States.

Doctors from across the United States send children here for treatment because of our specialized expertise. We see nearly 2,000 children with vascular anomalies each year, more than any other hospital in the region

For more information, contact the Vascular Anomalies Program by email or by calling 206-987-4606. If you would like an appointment, ask your child’s primary care provider to refer you.

Providers, see how to refer a patient

Alexis Pitt

“As a mom, you always want the best for your kids, and we found the best. Alexis grew up with her normal being a trip to the hospital every few weeks for the first 7 years of her life. She didn’t know anything different. For her not to have to go through that anymore is something I’ve always dreamed of.”

– Erin Pitt, Alexis’ mother Read Alexis’ journey.

    • We have treated hundreds of children for VMs. Doctors with less experience might confuse a VM with 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, 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. If tests are needed to confirm it, 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 physician-scientists have created a gene panel to test patients’ tissue and body fluids for the genetic changes known to cause vascular anomalies. We can test DNA in tissue sent to us from doctors across the nation. No other children’s hospital has a gene panel certified for clinical use with vascular malformations. This certification means doctors can make treatment decisions based on the results.
    • The gene panel helps us identify the exact genetic cause of a VM in some children. A precise diagnosis may expand your child’s treatment options to include drugs that target the overactive 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.
    • 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.

Symptoms of a VM

A VM may appear at birth as a painless, dark-colored mass below the skin. Sometimes VMs are not seen until a child is older or even an adult. Most children have VMs only in 1 part of their body. They grow slowly as your child grows.

VMs close to the skin or mucous membranes may be painful or bleed. Depending on where it is, a VM can affect your child’s movement, breathing, sight or other functions. During the pre-teen years, a VM may begin to swell and cause pain. The swelling can affect daily activities or make it hard to play sports.

A VM often swells when pressure increases, like when a child bends over so the VM is below the level of their heart. VMs go back to their original size when the child rests or changes position so the VM is above their heart.

Diagnosing a VM

To diagnose a VM, first doctors will:

  • Ask about your child’s health history
  • Examine your child

Most likely, your child will have imaging studies or genetic testing.

The doctor may take pictures of the inside of your child’s body with:

  • MRI (magnetic resonance imaging)
  • CT (computed tomography) scan
  • Doppler ultrasound
  • Angiogram

These images help us:

  • Confirm the diagnosis
  • Show the extent of the VM
  • Plan procedures
  • Find out what is causing symptoms
  • Track how a VM is changing

We have created a way to test body tissue for genetic changes (variants or mutations) known to cause vascular anomalies. Genetic test results help inform your child’s diagnosis and may help guide treatment decisions.

After reviewing all the information, the team will recommend a treatment plan for your child.

Treating a VM

The best treatment depends on the size and location of your child’s VM and whether it causes pain or problems in the affected part of the body. We watch your child closely. If treatment is needed, we review options with your family and come up with the best plan for your child.

Some patients will have a combination of these options. Not all VMs require treatment.

  • We check your child at regular follow-up visits. 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. We partner with you to decide the best care for your child.

  • Some children take medicines such as sirolimus and aspirin to treat symptoms caused by VMs. 

    Some children take blood-thinning medicine because slow blood flow can cause blood clots to form in the VM. Medicine can decrease the pain and severity, as well as the number of blood clots.

  • Some children wear a tight-fitting compression stocking, glove or sleeve to slow the growth of a VM on an arm or leg.

    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 abnormal vessels.

    Laser treatment often improves skin discoloring. But it does not remove or reduce a mass or bump. Your child may need multiple treatments. We partner with you to decide the best choice for your child.

    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 or dark color

    First, a doctor trained in imaging (interventional radiologist) uses ultrasound to find the abnormal veins. They inject a medicine into the VM to make it shrink over time. Your child’s body sends blood to healthier veins. The affected vessel forms scar tissue. Over time, your child’s body absorbs the scar tissue.

    Some children need this procedure several times to make their VM small enough to reduce pain and prevent problems in the affected area. Sometimes the vessel enlarges again, and we need to repeat the procedure. 

    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 much

    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. Our doctors were the first to use medical-grade Super Glue to remove the tangle of extra veins in a single surgery.

    • Before the procedure, we give your child medicine, so they sleep without pain (general anesthesia).
    • Watching on monitors that show your child’s VM in real time, an interventional radiologist places the needle in exactly the right spot. This assures that only the abnormal veins are injected with glue.
    • The glue hardens the VM without harming the tissue around it.
    • Using a CT scan, we make a 3-D image to guide surgeons during the delicate procedure.
    • Surgeons remove the VM with the glue inside.

    At Seattle Children’s, glue embolization surgery is an option for children with VMs in many parts of the body. Read how:

    We map nerves to make surgery safer when removing facial VMs. Before surgery, we use small electric pulses to pinpoint the facial nerves. During the procedure, 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. Read Emma’s story.

  • For some children, genetic testing helps doctors identify the exact genetic 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.

Contact Us 

If you have questions about a consultation or second opinion, email us or call 206-987-4606. If you would like an appointment, ask your child’s primary care provider to refer you.

Providers, see how to refer a patient

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Paying for Care

Learn about paying for care at Seattle Children’s, such as insurance coverage, billing and financial assistance.

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