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Kaposiform hemangioendothelioma (KHE) is a non-malignant tumor of the blood vessels which develops below the skin in the majority of cases. However, in rare cases KHE can develop in the organs, close to the lungs or within the abdominal cavity. Children are at most risk of developing the rare form of kaposiform hemangioendothelioma. Another condition, Kasselbach­Merritt syndrome (KMS), can sometimes result from a hemangioendothelioma.

Although these vascular tumors are not malignant, the development of KMS is a serious complication that will cause rapid tumor growth. Another complication of KMS is a significant reduction in platelet numbers, which in turn inhibits the blood’s ability to clot. When clots do form, there is the risk of a blockage of normal blood flow reaching tissues.

Symptoms and Diagnosis

A tumor that is present at birth or develops before the child reaches the age of one may indicate a KHE. Tumors are raised in appearance and look similar to bruised skin. If the area around the tumor sweats more than expected or there is excessive hair, a KHE is the most likely cause. You will typically notice KHEs around the arms and legs. However, they can also develop on the torso, head or neck. There are also visible and physical signs of KMS, which include pain as the tumor grows and purple to brown appearance due to bleeding that is occurring beneath the skin.

Kaposiform Hemangioendothelioma Treatment

Medications are the first course of treatment that is recommended in less severe cases of KHE. Aspirin can help reduce clotting, sirolimus is used to improve clotting and reduce the size of tumors and platelet therapy is often recommended where complications exist. Ultimately, your child’s treatment plan will depend on a number of factors which Dr. Greg Levitin will identify during the evaluation stage of treatment.

The Vascular Birthmark Center can offer surgical options when KHE tumors are safe to remove. Dr. Greg Levitin will also closely monitor your child’s KHE, especially during the first vital year of life when complications from Kasselbach-Merritt syndrome are most likely to arise. All treatment options are fully explained in further detail during your appointment with a specialist at the Vascular Birthmark Center. It is important to Dr. Greg Levitin that you are able to make informed decisions about your child’s health and aftercare.

Next Steps

If you have been given a tentative diagnosis of KHE for your child and would like a second opinion or input from a specialist, reach out to the Vascular Birthmark Center in either New York or Los Angeles. We are available over the phone or via our website where you can receive a free consultation where most, if not all, your questions will be answered in real time.

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Our Patient Reviews

4.8 / 5.0

Based on 27 reviews

Abril M.

Dr. Levitin is very knowledgeable, compassionate and professional. Five years ago, I needed to find information about a birth mark that my newborn daughter started to grow a couple days after birth. I was afraid, I did not feel like I got any clear information about it through my insurance; also, they did not offer any course of treatment for it. I started to look for information, the birthmark was growing each day, information was scarce and I just got more scared. Finally, I found a video in Youtube from a grandmother who was very grateful after finding treatment for her grand daughter through The Birthmark Foundation. It was a huge blessing to me and my family. I found Dr. Levitin, I contacted him thinking he probably would not even answer. I was wrong, he kindly answered promptly, got in touch with me and soon he had a plan : ) I went to see him at the Birthmark Center in Los Angeles. He explained everything in a way that it was so clear to understand, no question I made was insignificant and his answers were each very informative. I really never have had an experience with a doctor who explains and speaks in such a way. I left his office knowing that my daughter was in the best hands and the best care. I first thank God for the Birthmark Foundation, a great organization with the highest quality of doctors. Also, a very special thanks to Dr. Levitin for all his help and kindness, for listening to my concerns and answering each and every question. And last, but no least, to the Birthmark Foundation Center in Los Angeles : ) I hope many children can find help/care in this place as I found it for my daughter. Thank you forever.

Ryan E.

I will be telling tales of the good doctors compassion till time comes to an end. Because of Dr Levitin, I have more confidence in my every day life. He was fast, knowledgeable, precise and all with a disarming sense of humor. Two thumbs up!

Carla M.

I wanted to show you how much better Hailey's tongue looks and let you know her speech has already improved so much!!! Her speech teacher is thrilled!!!! Thank you so much for everything you did for her. You are an excellent surgeon with a great bedside manner- we are forever grateful to you!!! We are so appreciative!

Danielle L.

we are forever grateful for Dr. Levitin. My daughter Lena had surgery to remove her hemangioma that was located on her forehead at just 6 month old. she healed beautifully and we couldn't be happier with how minimal her scar is, even almost 4.5 years later. Dr. Levitin is caring, compassionate, and such a great doctor/surgeon overall. He had our daughter's best interest and I knew she was in good hands. I highly recommend him any chance I get!

Chris

My name is Chris and I was recently treated for an AVM on my forehead by Dr. Gregory Levitin of New York (New York Eye and Ear Infirmary). Thankfully, I live within a few hours of NYC. In brief, I would like to say that Dr. Levitin is very capable doctor with a lot of experience with AVMs. He responds quickly to e-mail, texts, and phone calls. He accepts insurance. He takes a "team approach" and will be your "QB" and involve other specialists as necessary. In my particular case they were Dr. Raj Shrivastava (Mt Sinai) and Dr. Raphael A. Ortiz (Lenox Hill) in NY. I recommend contacting Dr Levitin for a consultation if you suspect you have an AVM. All 3 Drs are just good people. When I spoke to them, they treated me like like an equal. I felt like they were advising me as a close friend or family member. Like many that suffer with AVMs I was at first mis-diagnosed. What was thought to be a just a simple cyst turned out to be an AVM. Surgery to remove the cyst made the AVM about 5x bigger. My treatment entailed a few MRIs and CAT scans to determine what was going on and the treatment plan. This was followed by consultation with the 3 Drs mentioned above and finally a 2-day procedure. On day 1 Dr Ortiz embolized the AVM. On day 2 Dr Levitin and Dr Shrivastava removed the AVM from my skull and put some metal mesh there to fill the "hole". It has been 6-months since the surgery and so far I have not had any recurrence. In honor of Vascular Birthmark Awareness Day and to thank these Drs for all they have done for me, I just want to give everyone a solid reference. Finding the right doctor for this type of stuff makes all the difference.

Valle S.

I just discovered this page i have also a birthmark I always experiences bully because of this. I don't know what kind of birthmark is this if it is harmful ? I hope Dr. Levitin notice this message in this way I think he can help me :) :) #DrLevitin

Alicia M.

This year marks the 10th that I contacted VBF for help. Since then I have been under the care of Dr. G Levitin and Dr. R. Ortiz, they are my guardian healing angels! Thanks VBF for not only helping me but also for letting me be a volunteer in the foundation whenever I am needed. A Big Hug to all from MIAMI... Alicia

Alexander G.

Totally positive experience. Dr. Levitin is a great professional. He has diagnosed and treated my nose breathing problem, significantly improving my quality of life. Office staff is very professional. Appointments always kept on time. Strongly recommend.