Thursday, March 15, 2012

All About Hemangiomas

Our son is the most beautiful and perfect blessing we could ever receive. How can other people not see that? They look at him and all they can see is his lip.

I had a very typical pregnancy, no complications or worries, besides the couple false labor alarms. My labor and delivery went as smoothly as it possibly could have. My beautiful baby boy was finally here! But despite how routine everything went my son still ended up having a birthmark called a hemangioma.

I know I've briefly explained what it is on my blog before, but I'll try to be more detailed this time. A hemangioma is a buildup of blood vessels underneath the skin. It's considered a benign tumor and can be superficial or underneath the skin. They usually occur on the neck and head but also show up on the rest of the body. Hemangiomas usually are not present at birth but show up as a slight pink mark within the first few weeks of life. They grow in size and get darker for about the first year then they'll slowly start to shrink and sometimes go away completely within a few years. They say 50% will be gone by age 5 and 90% by age 9. Sometimes they'll also become raised from the skin. Most doctors take a "wait and see" approach when it comes to treatment, meaning they'll just monitor it and make sure it doesn't ulcerate and that with time it'll go away on its own. Other times, like when they appear on the eyes, nose, mouth or internal organs, treatment will be needed. Since hemangiomas grow rapidly in the first year and it is impossible to know what turn they'll take, the ones on these important areas need to be closely monitored with treatment started as soon as possible. Treatments include laser therapy to help reduce the red pigment, corticosteroids and beta blockers to make them stop growing, and finally surgical removal of the hemangioma. Of course these all come with their own side effects and warnings since such a young child is involved. Less than 10% of babies get them with females being 3x more likely to get them than males.

Unfortunately, I've had to do all my own research on the topic because our pediatrician just told us to "wait and see" what happens with it (but with my research, I've read that since its on his lip he should have been seen by a pediatric dermatologist as soon as it appeared). It wasn't until I told our pediatrician that I think he might have one on his left inner eyelid that he referred us to the dermatologist.

When Jax was just a week and a half old we noticed a little mark on his lip. We thought it was a blood blister since coincidentally he sucked in that side of his lip when he slept. It wasn't until the appointment with the ENT doctor when he was about a month old that she told me it was a hemangioma. I started doing my research and came across some Google images of them. I was absolutely mortified!! What was I going to do? How do I stop this from happening? Luckily for us, a lot of those pictures are from severe cases and I don't think Jaxon will end up like that. Jaxon's hemangioma has started to grow pretty quickly the past few weeks. Our dermatology appointment isn't until early May which really scares me. There is so much that could happen in two months. We have to keep his lip moist so it doesn't break open and bleed because that'll leave a noticeable scar even if his hemangioma goes away. I have emailed a world-renowned surgeon, Dr. Levitin, who deals with vascular birthmarks for his opinion. He has offices in New York and Los Angeles. From other parents I've talked to, he really knows what he's doing and is extremely helpful. I'm assuming when we're finally seen by a doctor that we'll be put on Proponol for several months to see if it stops the growth of the hemangioma. If not, we'll probably discuss surgery options to remove it and correct any abnormalities that it has done to his lip.

I understand people are going to be curious and ask questions about my son's lip. On good days I'll probably stop and explain to them what it is. On other days I'll quickly write it off as a birthmark. But when someone makes rude comments about it or accuses me of hurting my son then Mama Bear will come out. If adults, the ones who are supposed to think before they speak and be the older, wiser kind say rude things to me about Jaxon then what am I supposed to expect when he goes to school? How am I supposed to be okay with kids teasing him about the big mark on his lip and always asking him questions? How am I supposed to bite my tongue when he comes home upset because someone new pointed it out? We all know how mean kids can be and how they don't know how to hold things back. My son could be the most sweetest, funniest, good-looking boy but unfortunately he'll still get made fun of. I hope he has the strength to laugh it off and not feel overpowered by the bullies. I hope people can see past his hemangioma and learn all about Jaxon, the boy with the best personality that despite his hemangioma is still incredibly handsome!


Jax about a week old, before hemangioma

Jax 12 days old, beginning hemangioma


Jax about 3 weeks old beginning hemangioma



Jax about a month and half old



Jax a little over 2 months old


Jax yesterday, 3 months


Jax 3 months




I know that God will not give us anything that we can't handle, so I know this is His way of showing me that I am strong enough to deal with it. Jaxon is strong enough to deal with it. We will continue on and find ways to cope and treat his birthmark and one day we'll look back and laugh at how much stress we went through.

Our son is the most beautiful and perfect blessing we could ever receive. How could other people not see that?

6 comments:

  1. Alycia,
    Did you see Dr. Levitin or another Pediatric Dermatologist? Also, have you started using any of the beta blockers?

    Thanks,
    Hamid

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    Replies
    1. Hamid,

      We did not see Dr. Levitin personally but I did talk to him and send him pictures of my son's hemangioma. I do know several people who saw him and they don't have a single complaint! Everyone I've talked to loves the outcome from Dr. Levitin. We just saw a local ped. dermatologist, but she has been great so far. We've done two laser treatments and the hemangioma has stopped growing and the color is fading. As of right now we are not going to use the beta blockers since the laser is going well. But we will re-think about the medicine in a couple months when we have our last laser session. I hope this helped some!

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    2. Alycia..
      Wanted to get back to you. Our son's Hemangioma was right on the tip of his nose; became apparent 3 weeks after birth and started growing rapidly from weeks 4-8. In the mean time, we sent the photos to Dr. Levitin and talked to him on the phone as well. He recommended propranolol (beta blocker) for this kind of Hemangioma. We also researched the birthmarks.org site for experiences of other people and got a referral to Dr. Metz in Irvine, CA. We also conducted a few heart examinations to assess the suitability of putting our son on propranolol. After talking to 3 Ped Dermatologists, we decided to start the medication. He was hospitalized for 3 days last week to start the medication (babies less than 3 months have to be administered this med under constant monitoring and supervision). We are seeing good results so far even though he's on a low dose. Hoping that the med keeps working and improving his condition.

      Hope your son is doing ok and the discoloration has vanished.

      Best Regards, Hamid

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  2. Hi Alycia... wanted to give a quick update. Our son has been on Propranolol for for over 3 months now. The hemangioma on the nose is hardly noticeable .. there's a faint blue streak but that's it.

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    Replies
    1. Hamid,

      I am so incredibly happy for you and your family! I have heard nothing but success with the Propranolol medication. I hope your son continues to have great results and soon his hemangioma will be a thing of the past. Thank you for your update!

      Alycia

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    2. Hamid,

      I am so incredibly happy for you and your family! I have heard nothing but success with the Propranolol medication. I hope your son continues to have great results and soon his hemangioma will be a thing of the past. Thank you for your update!

      Alycia

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