Hemangioma Info

August 9, 2012

Lu's turning 1 seemed like a good time to check in with the Hemangioma Clinic so off we went!  It was so odd to be there and have Lu WALKING around and socializing with all her favorite doctors.  I don't know why it blew me away but as I walked behind her down various halls (letting her knock on different doctors' doors lol) I just was so overcome with the fact that she was just walking around like no big deal 'ma!  Anywhooo...because her eye still has some sag to it we also met with the pediatric eye doctor as well.  Once everyone compared notes and test results it was decided that the droop is simply from the weight of the hemangioma pushing down on her eyebrow not from any pressure on the actual eyeball.  There's still no telling what will come it but for now it's nothing to worry about.  The pediatric eye doctor asked that she come back at 3 years old to re-test her vision and the pressure in her eye (unless of course we notice a severe change).  Everyone also noticed what we had recently, that the center part of the hemangioma has deflated a bit (i.e. it looks less inflated or raised off her head).  We discussed with the team our future hope of having her go off to preschool hemangioma-free and all agreed that that was in her best interest so now we just wait to see what it will do in the meantime.  If by some miracle it shrinks down fairly soon she will still need a surgery to remove the fatty tissue that will most definitely be left behind simply because of the size of her big H.  I'm holding out for some infinitesimal miracle that it will go away over night leaving not a single reminder of its presence...I would do anything to prevent Lu from having to be on an operating table :-(

February 2012

To read about our February 9th appointment, click here.

December 9, 2011

I thought it was time to do a little update on Olivia and the big H.  She has seen her team of specialists once more (in November) and everyone seems to agree it looks like it has stopped growing.  We are trying not to get too excited but she is also getting some "silvering" to it which means parts of it are starting to look translucent.  It could still be several years before we see any real improvement but for now this works for us!  After my last update her ulceration grew quite large and black covered the entire top of her hemangioma--it had bleeding and pussing but then improved over a months time.  Towards the end of November most of the black was gone but then just this last week a decent size chunk has come back--poor baby!  It hasn't bled this time around but has had some oozing which does not make for very pretty holiday pictures...hence the hats, bows, headbands, etc...hence....I thought it was also time to answer the most asked questions we get:

Does it hurt her?

This one is hard to answer since we can't ask her :-) However, in our opinion, it does not seem to bother her.  She does not grab for it or flinch if we touch it.  When it is in its bleeding/pussing phase it does not even seem to bother her--although we do notice when it is like this and she is on tummy time, she sort of buries her head and rubs it back and forth, leading me to believe it's simply an irritation or it itches--she NEVER cries about it.

What happens if she bumps it?

Believe it or not that sucker is pretty hardy and that's saying a lot given what an active baby Olivia is.  For those that have spent any length of time with her, you know how crazy she is!  That child is constantly rolling, scooting, and flailing about!  Only when it has ulcerations do we watch her carefully to make sure she doesn't irritate it any further.  Other than that, she is pretty rough on it and it just sticks around :-)

What caused it?

Nobody knows.  The precise cause of hemangiomas isn't completely understood but some studies have shown a correlation between mothers with high estrogen during their pregnancy.  I tend to think this makes sense since I had high estrogen with the twins--it also makes sense why hemangiomas are more common in multiples and girls--"multiples" pregnancies produce more estrogen and girl fetuses have their own estrogen.  Basically I was an estrogen oven!  Why then does Emma not have one?  That's a good question and just like the exact cause of hemangiomas is not known, neither is why one baby has one and one doesn't.  At our hemangioma clinic we go to there is a set of triplets--one has a very large one, one has a very small one, and the third has none!

What will happen when she becomes aware of it?

Nothing :-)  It is a part of her, plain and simple.  It will always be a part of her story and her uniqueness.  Obviously I dread the day someone makes fun of her and I have to comfort her but if it had to be one of our babies, it really is best that it is Olivia.  That kid has an amazing disposition, is always happy, and nothing seems to bother her.  I imagine she'll handle it quite well.  In time, this will all be a distant memory and we will all sit around and laugh at the silly hats and bows I put on her in an effort to hide it.  I do wonder whether she will wish I hid it in more pictures or if she'll wish I hadn't hid it all--I can't wait to see the person she becomes.

Why don't you just have it removed?

This is a complicated question with lots of factors.  The biggest factor right now is that anesthesia is delicate with a baby her age.  Also, removing it when it is this large will require a second surgery down the road to revise the original scar.  In addition, there is always the possibility (however small) that tomorrow it could start to fade on its own.  We know the average age of fading is around 4-6 but there are cases where they fade earlier.  Our thinking right now is that as long as it isn't affecting her/hurting her, we are in no rush to have her on an operating table.

How do you deal with the staring or peoples' questions?

Believe it or not people have been very polite and typically fall into three categoris: those that say nothing (but we know they want to), those who say something because they know what it is and want to share their experience, and those that flat-out ask what it is.  Those who don't say anything don't fool us--we know you're trying not to look at it, let's be real here.  It's large, red, and a little bit scary looking.  If it were growing out of your head I'd wonder about it too :-) But I get why you don't say anything--you probably imagine I get sick of talking about it or maybe it is something really horrific and it will upset me to talk about it.  Those that know what it is are my favorite people :-)  Sometimes their information is accurate, other times it isn't but nonetheless these people are genuine and sincere.  I enjoy talking with others who have had one themselves or knew someone with one and we are a small crowd so it amazes me when I do run into one of these people (to date this has been in Home Depot and two DIFFERENT hair salons).  Finally, those that ask outright.  You might think these are the people that upset me, but they really don't.  We have been fortunate that those who have asked outright about it have been genuinely interested and took the the time to let us explain about it.  Honestly, no ones' reaction has been negative or awkward, almost all of those that ask word it something like this "Oh, she has an owie, boo-boo, ouchie, etc."  I figure for every person I set straight, one less little kid somewhere with a hemangioma has to feel uncomfortable.  I know a day will come when some heartless person will say something mean (I've heard this from other big H mommas...one was asked if it was a cigarette burn on her kid, really????).  When this day comes I will do my best to not jump into momma bear mode but honestly if you say something dumb you deserve to be made to feel dumb :-) End of story!

What is the biggest challenge with the hemangioma?

The honest answer is dressing her :-)  She is so wiggly to begin with and then add in trying to pull a shirt over her head without it getting stuck on the big H and dressing her can take 15 minutes, easily.  In second running to dressing her is all the extra doctors appointment.  It does get old driving back and forth to Los Angeles--setting up babysitting for Emma, getting a bag ready to be away from the house, dealing with missed naptimes/meals, traffic, etc.  The great news is Olivia LOVES the excursions and the attention!  She easily does without napping and is always well-behaved in the car (Emma on the other hand...haha).

By all means, I know there are a ton of other questions people have, so feel free to ask and I will post answers here.  Very little offends me (try growing up with my dad--sorry dad! But thanks for giving me a hard exterior, who knew how handy it would come in?) and I'd rather just tell it like it is then avoid the subject.




October 2011

For most who have seen Olivia it is very obvious something is growing on her head--it's technical term is hemangioma but in plain terms it is a tumor.  While hemangiomas are in the birthmark family they are in fact a type of tumor (an abnormal collection of blood vessels in this case) but are usually non-serious and are not life-threatening.  Hemangiomas typically appear at birth or shortly after and then grow very quickly until a baby is 6-8 months old.  They then enter a period of "rest" where they stay the same and this can last a couple years to several years.  Eventually, most hemangiomas start to disappear around school age and leave very little evidence they were ever there.  Issues arise however when the hemangioma grows too large too quickly, when they begin to ulcerate/bleed/become infected, when they start to affect a child's image, and a host of other situations.  At the age of 6 weeks Olivia's hemangioma had already started to ulcerate (the center of her hemangioma started to turn black) so she was sent to the Vascular Birthmark Clinic in Los Angeles. At the clinic we met an amazing group of people who are dedicated to vascular birthmarks and growths. We met our new pediatric dermatologist, surgeon, plastic surgeon, laser doctor, regular pediatrician, and THREE more dermatologists! Here we learned Olivia has a combination hemangioma. Usually a baby will either have a surface hemangioma (the typical bright red flat mark) or a cavernous one (deep below the skin, usually not visible except for some bluish coloring). Her hemangioma is both, making it appear very large and protruding quite a bit off of her head. We were told about all our different options: continue with the steroid cream to slow it, oral medications, laser treatment, surgery, or do nothing. Alex and I still have a lot to discuss but it's pretty certain that she'll need at least one surgery. If we don't do surgery now and let it fade on it's own it is likely to leave a bubble of discolored skin behind because of its' size and that would need to be surgically removed. She may also be 10 years old by the time it fades on its own or she could be 3, there is no certainty. If we just have it completely removed right now she would need two surgeries-one now to remove the entire thing and then another a few years later to revise the scar. If we choose to just watch it and keep using the cream there is the possibility that her ulcerations will continue to worsen, eventually bleeding/oozing. At that point they could try the laser which has success in removing the ulcerations and allowing the hemangioma to heal correctly (but the laser does not remove the hemangioma). However, the laser is painful and often traumatizing because there is no sedation. We've got a lot to contemplate. Luckily they all agreed as long as it's not bleeding or infected that her growth is relatively stable (health-wise not size-wise because it is likely to continue growing for more months) so we have some time to think about everything.  We are so lucky that Olivia is such a good sport about everything, she is such a happy baby and gladly puts up with all the appointments, strangers touching her, etc.  I tell her everyday how she is part of a select few who were chosen to get unicorn horns and that she has special powers.  We're still waiting to see what her "powers" will be but I'm pretty sure if her disposition is any indication that her powers will have something to do with extreme happiness :-)