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What Parents Need to Know About Lymphatic Malformations

What Parents Need to Know About Lymphatic Malformations

Guest Post by Katy Fleming, MA, LPC, BSN, RN

When a parent is told that their child has a lymphatic malformation, it may seem like a mystery.  Most have little knowledge of this relatively uncommon condition until it affects someone in their family.

Lymphatic malformations result when lymphatic vessels don’t form properly.  Often detected in early childhood and even before birth, lymphatic malformations appear as a benign mass.

What Parents Need to Know About Lymphatic Malformations

We’ll review all the important information that parents need to know about the diagnosis, treatment, and prognosis of lymphatic malformations.

What Parents Need to Know About Lymphatic Malformations

What are Lymphatic Malformations?

The lymphatic system is an important part of the immune system that balances our body fluid.  We have tubes all through our bodies called lymph vessels, which work similarly to blood vessels.  Rather than carrying red blood cells, lymphatic vessels carry waste, white blood cells, and fluids.

Lymphatic vessels keep fluid balance by retrieving excess fluid and waste from the tissue.  In lymphatic malformations, the vessels aren’t appropriately formed and the fluid accumulates creating a mass.

Approximately 75% occur in the head or neck, however, lymphatic malformations can occur in any part of the body.  They’re formed during pregnancy in early development, however, doctors don’t know exactly why.  

Lymphatic malformations are not caused by environmental exposure, medication, or anything that the mother does during pregnancy.  At times, they are identified in an ultrasound during pregnancy.  However, some aren’t diagnosed until the baby is born, during childhood, or even as an adult. 

Most lymphatic malformations are diagnosed by the age of 2.

Types of Lymphatic Malformations

Categorized by size, there are two different types of lymphatic malformations: 

  • Microcystic Lymphatic Malformations
  • Macrocystic Lymphatic Malformations

Micocysts are smaller, spongy pockets of lymph.  Macrocysts are larger, stretched-out vessels, which may contain lymph and/or blood.

Macrocystic lymphatic malformations are also referred to as cystic hygromas or lymphangiomas.

What are Lymphatic Malformations?

Who is Affected by Lymphatic Malformations 

As stated, lymphatic malformations are relatively uncommon ranging between 1 in every 6,000 to 1 in every 16,000 births. 

Lymphatic malformations occur more often in children with Down Syndrome, Turner Syndrome, and other chromosomal problems.  Children with older mothers are at higher risk, as well.  

Signs and Symptoms 

Each child has a different experience with lymphatic malformations depending on the size and location.  One person may have several lymphatic malformations, but they’re typically in the same general area of the body. 

As mentioned earlier, lymphatic malformations are most often in the head and neck region but could be found in most parts of the body.  Frequently, a lump or mass is found on the child’s neck.  

Some have bleeding, which causes the mass to grow.  Additionally, signs of infection may appear such as redness, swelling, pain, warmth, and drainage.

In general, lymphatic malformations are not typically life-threatening.  It can be a serious problem if they’re blocking a vital organ or causing an organ to not work effectively.

 Lymphatic Malformations

Treatment Options  

Since these masses are not typically cancerous, treatment is not always warranted.  If treatment is needed, it will depend on the size and location of the lymphatic malformations.  

As discussed, some inhibit vital organs, which case may require surgical removal.  Alternative treatment options include laser therapy, injecting medication into the malformation (sclerotherapy), and medications.


Final Thoughts

Remember, you didn’t cause your child’s lymphatic malformations.  Doctors believe that these occur at random, and those with conditions such as Down Syndrome are at a higher risk. 

Be sure to discuss treatment options and any other questions with your child’s physician.   Some children may benefit from speaking to a therapist regarding their experience with lymphatic malformations. 

Consider joining a local support or advocacy group to provide support for you and your family. 

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As a licensed counselor and registered nurse, Katy approaches freelance writing with years of experience and a unique perspective. Alongside her partner, Katy loves to travel the world and embrace other cultures from volcanoes in Iceland to villages in India. 

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