What is lymphedema?

Lymphedema is swelling that happens when clear, protein-rich fluid called lymph builds up in the body. The swelling most often affects an arm or leg.

Lymphedema happens because the lymph system cannot drain lymph well. The lymph system is a network of small tubes (vessels) that pick up lymph from all around the body. These lymph vessels channel the lymph nodes through the lymph nodes and into the large veins that return blood to the heart.

Lymphedema is not the same as the normal swelling after an injury, like a sprained ankle. Normal swelling usually goes away for good after a few days or weeks. Lymphedema does not get better on its own.

Some children have lymphedema because their lymph vessels or nodes did not form properly before birth. This is called primary lymphedema. It may be linked with other conditions, such as:

Other times, lymphedema happens because part of the lymph system is removed or damaged. Causes may include cancer treatment, injury or infection. This is called secondary lymphedema.

Lymphedema at Seattle Children's

Seattle Children's has the only program on the West Coast that treats lymphedema in babies, children and teens. Experts at our Vascular Anomalies Program are very experienced in diagnosing and treating lymphedema and the conditions that may cause it. Vascular refers to the tubes (vessels) that carry blood and lymph in the body.

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.

  • The experts you need for accurate diagnosis and care
    • Our Vascular Anomalies team brings together many types of healthcare providers to assess your child and treat them. The team includes experts in disorders affecting the skin (dermatology) and bones and joints (orthopedics).
    • Our occupational therapists and physical therapists have special training to treat children with lymphedema. Our certified lymphedema therapists teach children and families to manage it at home.
    • Lymphedema can result from a vascular anomaly like a lymphatic malformation or Klippel-Trénauny syndrome.We have the skill and experience to correctly diagnose your child. If tests are needed to confirm it, we have a broad range of options, such as genetic testing and imaging studies.
    • 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.
    • Learn more about vascular anomalies research at Seattle Children’s.
  • Team approach for complete care
    • 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 is 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.
  • We treat your whole child
    • Our specialty is treating children’s disease while helping them grow up to be healthy and productive. 
    • 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 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 Lymphedema

If your child was born with an abnormal lymph system, symptoms may start at birth. But in some children and teens with primary lymphedema, symptoms start when they are older, such as during a growth spurt.

If your child has secondary lymphedema, symptoms will happen after part of their lymph system is damaged or removed.

  • Most often, lymphedema affects an arm or leg. It can also affect the head, neck and trunk.
  • The area gets larger than normal because lymph builds up.
  • The area may look puffy, and the skin may appear tight.
  • Your child's clothes or shoes may not fit well over the swollen part.
  • The area may feel full, heavy or achy to your child.
  • The body part might become harder to move or bend.
  • Swelling may be worse at the end of the day or after your child has been more active.

Diagnosing Lymphedema

During your first visit, the doctor will examine your child and ask about their symptoms and health history.

This may give us all the information we need to make a diagnosis.

Sometimes we need to take pictures inside your child’s body. Imaging studies may include:

  • Ultrasound to see what is causing the swelling. The cause could be lymph, blood, a blood clot in a vein or something else.
  • MRI (magnetic resonance imaging) to look for missing or abnormal lymph nodes or other causes of swelling, like malformed arteries or veins. Sometimes, the radiologist will add a dye into your child’s vein to better see the cause of the swelling.
  • Tests to map the lymph system and track the flow of lymph to find points that are blocked or have leaks. These tests are called lymphography and lymphoscintigraphy. Few children need these tests.

Your child's doctor may recommend genetic testing and counseling if your child's lymphedema might have a genetic cause. Our team has created a way to test patient tissue for genetic changes known to cause vascular anomalies. Genetic test results help inform your child’s diagnosis and may help guide their treatment.

Problems That Lymphedema May Cause

Lymphedema is long-lasting (chronic). It gets worse if it is not treated.

  • Once lymph collects, it pulls more fluid to that area.
  • Lymphedema can lead to hardening of the skin and tissue (fibrosis), which makes it harder for lymph to drain.
  • Swelling and fibrosis keep oxygen and nutrients from getting into the area. This can keep wounds from healing well. It can increase the risk for infection in the skin (cellulitis) and lymph vessels (lymphangitis).

Treating Lymphedema

A child who might have lymphedema should see a vascular anomalies specialist. There is no cure for lymphedema. But with treatment, your child will feel better and can stay active.

Treatment can help:

  • Move lymph
  • Reduce or prevent swelling
  • Prevent problems like infection and hardening of the skin and tissue

certified lymphedema therapist will see your child and create a treatment plan just for them using complete decongestive therapy (CDT). There are four parts to CDT:

  • Skin care

    Simple steps can help keep your child's skin healthy and prevent infections or give you a chance to notice and treat any infection early. Your child's therapist will teach you and your child:

    • How to keep your child’s skin clean
    • How to take care of minor wounds
    • Signs of skin infections
  • Manual lymph drainage

    This special method of gentle massage can improve the flow of lymph into and through the lymph vessels. Your child's therapist will use this method to drain a swollen area. We will teach you and your child how to do this at home.

  • Compression therapy

    Wrapping your child’s swollen limb with short-stretch bandages can get lymph to flow out of the limb into the trunk of their body. Your child's therapist will do this and teach you and your child to use wrapping at home.

    Once the swelling goes down, the therapist will measure your child for custom compression garments. Your child wears these special sleeves or stockings to keep pressure on the area and prevent lymph from building up again.

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

  • Exercise

    Moving and stretching the muscles and skin can increase flow through the lymph system. To promote movement throughout the day, a therapist will create a simple home program that is right for your child.

    Read about exercise with arm lymphedema (PDF) and exercise with leg lymphedema (PDF).

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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