Hemangioma – Our Story

I was thrown into the world of hemangiomas just recently.  A hemangioma is an abnormal growth of blood vessels in the skin.  Hemangiomas can be deep or superficial.  A deep hemangioma is under the skin and a superficial is on the surface of the skin. There are several treatments out there including surgery, medication, and the “wait and see” approach.

Here is C’s story. I started to notice a little mark on my little guys forehead when he was about 4 weeks old.  At first I thought it was a scratch or just some dry skin.  The mark wasn’t going away and seemed to be getting more red to me.  So I went to see my pediatrician when C was just short of 6 weeks old.  She told me it was a very superficial  hemangioma and just to watch it. She said that his was so small that she wouldn’t even refer me to a dermatologist until it became larger.   She said that it may grow and it may raise off his forehead for the next year then start to go away.  Many hemangiomas are gone by school age with some lasting up to the age of nine or ten.  I had been googling and thought that is what it might be and I had seen the pictures of what hemangiomas look like as they grow.  So my thoughts as I was walking out of her office, the heck if I am going to watch this mark grow on his forehead if I can help it  ( I do love our pediatrician).  Maybe it is my profession where we think preventive but I thought why would I want to sit here and wait for something bad to happen if there is a way I can help it.  I went home and started searching the internet like crazy.  I came across the site www.birthmark.org.  The site was wonderful and I emailed one of the doctors on the site.  I sent a picture of Cade with the information on what was going on.  He responded to me within a day of what he thought.  Unfortunately this doctor was in New York and I am in Minnesota.  He did put me in touch with a wonderful doctor here in Minnesota.  We are lucky that we have Mayo Clinic just down the road from us and tend to have a specialist in everything!  Through consultation with Dr. Levitan in New York and Dr. Delfanian in Minnesota we concluded that laser surgery would be beneficial for C.  They both agreed that the sooner it is treated the better.  There is no use in waiting to see if it was going to grow into something troublesome if something could be done to prevent it from getting worst and needing more extensive medication or surgery later.  I must say these two doctors are wonderful, so helpful and very dedicated to their profession.  C underwent his first laser surgery on October 4, 2013.  The surgery was so simple.  It took about 2 minutes literally, no anesthesia just a little numbing gel.  His 2 month shots were far more traumatic for him.  Afterward it looked a bit scary but we were thrilled with the results.  He underwent a second about a month later and it faded it a little more.  At this point it is not growing and so light we are just watching it.  Luckily it has not grown or darkened in the past 3 months.
We feel so lukcy we found these doctors that are on the for front of hemangiomas and their treatment.  They are working hard to educate on advancements of treatment of hemangiomas.   These doctors are vascular doctors.  Many people get referred to dermatologists but since it was a vascular problem and not a skin problem, it made sense to me to go with the area that specialized in this. Certain hemangiomas are not appropriate for the “wait and see” thought.  Looking back I am so glad we did what we did.  C’s hemangioma was not a large hemangioma (or never got the opportunity to become one) but due to the location it was a smart choice.  Had it been on his back, leg etc we may have considered waiting and watching but following with the doctor closely.
I found a great Q&A with Dr. Levitin at http://functionalfather.com/hemangioma-qa-with-dr-gregory-levitin/ where he explains and answers questions about hemangiomas.  It was one of the most helpful resources I found on the internet as many resources still are under the old umbrella of wait and see.  Here are a few pictures of C so you can see the progression!  I tried my best to get pics that showed it.

The picture of C I sent to the doctors at 6 weeks old
A few days before surgery his birthmark had grown a little larger and was much redder and starting to raise off the skin slightly.
Right after surgery – obviously not too traumatic for him
After the second surgery.  It only looks like a very light at this point.

This is the most recent picture of him I have.  You can see where it is but you pretty much have to look for it!

 

12 thoughts on “Hemangioma – Our Story”

  1. Wow! Reading your blog is so comforting.. been searching like crazy about hemangiomas because I am so alarmed at my 6 week old baby boy’s red mark on his forehead. My pedia also told me to “wait and see”. We are from Philippines and I hope there are good doctors here who specializes the same that offers laser treatments just like the one your baby had is available here. Good to know your baby is doing well already. I hope my baby boy is going to be okay too.

    1. I’m so glad you found it! It was so nerve racking to me when we started to see it. You can’t see anything on his forehead at all right now (18 months) even if you look really hard…nothing. It was honestly the best decision we made. It was far less traumatic for him than his shots! Check out the website I mentioned in the post. The doctors are great! Best of luck!

  2. Hello, Great to see your baby recovering. We are also very concerned about our baby boy he also has this type of mark near his eye. Please can you share you babies current picture? and how many laser treatments he had?

    Thanks

    1. You can’t even see it anymore. We did 2 laser surgeries. Check out my instagram account there are several pictures of him. http//instagram.com/pinkoatmealblog

  3. Hi! Thanks for writing about your son’s hemangioma. My newborn daughter has a similar one on her cheek, which we are having evaluated by a vascular birthmark specialist next week … Out of curiosity, did insurance cover any of the cost of the laser treatment? If not,would you mind sharing a ballpark of what these treatments cost? Obviously, we’ll do what’s best for our daughter, but just wondering what we can expect to invest. Thanks!

    1. Yes, our insurance did pay. The doctor said that it was a “vascular anomaly” so it should be covered and it was. Good luck with your evaluation and feel free to email me any questions!

  4. Hello, my son has one very similar to your sons, but his in now raised and on the left side instead of the right. His pediatrician is really beating around the bush about us seeing a vascular specialist. She just emailed me staying she would send me to a pedi dermatologist to talk about starting the drug proponlol. I don’t want t to see a pedi derm, I wanna see a vascular specialist. How did you get your referral? I’m in Wisconsin and was trying to get my referral for Children’s vascular in the cities. Thanks!

    1. I didn’t get a referral. My insurance didn’t require one so I just went. I let my pediatrician know after I had gone. The doctor I saw was in the southern part of the metro area and specialized in it. It was a fabulous experience.

      1. We got our referral finally, after following our clinic protocol of trying to keep patients in network. Their network didn’t offer a vasular specialist and I was able to turn down their offer a get my referral to children’s. Was your sons raised at all?That’s my main concern in the severity of his.

        1. Glad to hear! It was starting to raise. At the time it felt like it was raising more and more each day! In our case though the laser did the job. It was not significantly raised at the time of the laser.

  5. Hi my son has hemangioma on his left eyelid. Its like inside because his eyelid is swollen. His doctor said it was capillary hemangioma. He gave us timolol for treatment but i cant see the progress because its like growing each day. I want to try propranolol but i have to ask his doctor about it first.

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