Saturday, September 1, 2012

Hattie the Hemangioma

So, I realized that I've written about Samantha's hemangioma before but I have never posted pictures of it. It's quite shocking when you first lay eyes on it. She's such a little baby and then there's this huge bump on her neck! My poor girl. We are in the process of getting an appointment scheduled with one of the top hemangioma specialists in the country. He is in Boston. So we will be taking a little road trip come October or November to go see him. Boston is only about three hours from us. Since our insurance agreed to cover it, we thought why not go get a third opinion about it. Awhile back her hemangioma (which I've nicknamed "Hattie") was ulcerating which basically means it was bleeding and causing her discomfort. It's actually looking a lot better now, believe it or not. But it is still HUGE...

We are most likely going to wait and hope it heals on it's own. They usually do by age one. However, there are other options such as a (blood pressure) med, laser, steroids and surgery. None of those sound appealing to us. I'm so torn about it though. On one hand, we are not that concerned with the cosmetic aspect of it. But in case it doesn't go away for years, I don't want our girl feeling uncomfortable about OR getting teased. Which, my husband said he would have to kill someone if they picked on her about it! And I believe him. I just don't want her saying to us in a few years "Why didn't you guys get this taken care of when I was too little to know the difference?" I'm also not crazy about the BP med that could help it shrink. She would have to be monitored for a few days in the hospital to make sure the meds didn't do anything crazy to her. However, I do have a few friends whose kids are on this med and they are fine! The doctors aren't crazy about steroids or surgery. Our main concern, is that it is going to start ulcerating again and causing her pain. Which was completely heartbreaking last time because she would SCREAM anytime we picked her up, got her dressed or bathed her. And also (in my crazy head) I am worried about the hemangioma growing deeper and wrapping around her spinal cord or something crazy like that!!!

I think heading to Boston will help us put our minds at ease about what we should or shouldn't do.

Here are a few pics. Not the greatest and a little blurry, but you'll get the idea! Hattie is huge! And Hattie needs to take a hike! :)


11 comments:

ADSchill said...

Oh, your poor little gal! I can see how that would hurt. I hope you get some answers for her and can somehow make it better. Sorry you and baby have to deal with this! At least it isn't hurting her right now.

cdg said...

poor little thing. hoping she remains pain free

J o s e y said...

Poor baby! Bad Hattie. I hope it resolves itself on its own this year!!

Samantha said...

Poor little peanut! It sounds like you have a good plan to keep your baby girl pain free. Let's hope that Hattie disappears very soon.

Jenny said...

:( poor Sam...I hate to think of your sweet baby girl in pain. I hope the visit to Boston will help sort things out for you...Hattie, go away!

Rebecca said...

OMG yes that needs to go away. I can only imagine how much pain that must have been inflicting on her when it would rupture. So glad she has two caring parents that want to take such good care of her.

Joys Truly said...

Damn Hattie! Poor little Sam, that must hurt. My friend's daughter has one on her nose. They chose the steroid route and it shrunk considerably but they also waited until their daughter was 3. Good luck with consultation.

Stephanie said...

Hattie does need to take a hike! I hope after your meeting with the specialist he gives you some options that you are comfortable with. That looks like it hurts, no wonder the little one would cry. Poor baby!

grkanga said...

knew a foster baby with a huge one on her forehead over one eye. Foster-mom was told it would get bigger for a year and then would gradually shrink and fade. It did as expected. It is now way smaller in size and projection outwards and is less colorful/visable, child is now 3. It remains uncertain if it will disappear totally in the next few years or if some treatment may be needed later on.
While that one was HIGHLY visible due to facial location it did not get rubbed or irritated by clothing or motion, it never bled, and that makes a difference. People would see her in public and go "OUCH what ow-ie!"; her foster-mom tended to find hats and then a hair cut that obscured it.
Another consideration in treatment choices was the possibility of a scar of equivalent size if medical intervention was needed. So be sure to ask about that as well.
Your specialist will be able to explain all the choices and what the special considerations that would apply with each.
As a general remark, for a few years other children by themselves will not react in ugly ways to the difference... that is something learned from adults or older children. So the social aspect of Hattie for now need not be a huge pressure. And, we all need to learn to judge or accept other peoples judgements on our own value and worth as a person. With her parents loving her your daughter will do well.

justagirl-Krista said...

She doesn't look like she is in any pain, but poor baby. Hope all goes well!

kkasun said...

Poor Sam, that Hattie sucks!

Avery has one, but it is on her rib cage, so it doesn't impact her very much, but I imagine, where it is on Sam would be awkward and uncomfortable.

Keep us posted.