Being your baby's advocate - hemangioma

I haven't blogged in a while but I figured I'd give you all an update on how our wonderful Penelope is doing.  She's a fantastic baby! She's learning how to make sounds and is cooing more often.  She is super sweet and likes to play bouncy on the knee, kisses on the face, and being sung to.

As a new mom, I am learning new things every day.  The thing I have been learning lately (what with my own experiences with doctors and now my daughter) is that you have to be your own advocate.  And you are also responsible for being your child's advocate.  Penelope has been developing a hemangioma on her right eyelid for about 5-6 weeks now.  It started out as a tiny red dot that I thought was a scratch and has developed into a larger red puffy growth about the size of a grain of rice.  When her eye is closed it's obvious that there is a bit of puffiness that isn't red - but more under the skin.

hemangioma 3/27/11

hemangioma 5/25/11

I talked to her pediatrician about it and she said that hemangiomas are very common with preemie babies and that it will probably continue to grow and then shrink and to not worry about it.  At first I was worried about the cosmetic issues with having a red bump on her eyelid - but figured that if it will go away than no worries.

Then I did some research online and FREAKED OUT! Apparently with hemangiomas on the eyelid there are additional complications that I was not aware of.  Because of where it is, it could possibly put pressure on the eyeball and cause an astigmatism. That is basically when your eyeball is more of a football shape instead of an orbital shape like normal eyes.  I actually have an astigmatism and it's not a big deal - BUT if a baby or child has an astigmatism and it's not treated with either glasses or other possible treatments, it could create problems with brain development.  Babies use their eyes to process information and if they are seeing a fuzzy image it could create either a lazy eye in the other eye or a delay in mental development.

In addition to this information I googled images of eyelid hemangiomas - some are huge and scary! Apparently in preemie children the fasted growth period for hemangiomas is between 4-6 months of age - so we're not even there yet.  Yes...freaking out!

So, I decided to be Penelope's advocate and set up some doctor's appointments. The first was with a pediatric dermatologist at Johns Hopkins Hospital. She looked at her and said basically the same thing as our pediatrician.  Keep an eye on it and see how it goes. I wasn't really that happy with the dermatologist because she didn't even touch Penelope.  Just looked at her.  We have another follow up appointment with her in a month but I'm thinking I may switch to a new dermatologist.

Then today we went to her optometrist.  She had her eyes examined when she was 5 weeks old because preemies are at higher risk for eye problems in general.  At that appointment her eyes were in perfect condition.  This appointment showed that she is starting to have an astigmatism in her right eye.  And the optometrist said that it's probably as a result of the hemangioma. He actually felt her eyelid and said that he felt that lumpy part of her eyelid indicated that the hemangioma is larger than what you can see and that part of it is deeper under the skin.  While she is not at the point of needing glasses yet, if it keeps growing and pushing on her eyeball we may have to have baby glasses for her!  We're going back to see him in 2 months to see how much her vision has changed.

So, basically I'm freaking out.  I don't want this thing to grow huge and impact her vision negatively! I don't want to have to worry about her developing a lazy eye! I also don't want to have her be negatively impacted by the cosmetic aspects of this growth.  Yes it's supposed to go away on it's own - but when?  It could take years  and I don't want her to be teased or bullied about something she can't help when she's in school.  So do you do anything about it? There are treatments, but with every treatment there is a risk.

So at this point we're in a holding pattern.  A wait and see with fingers crossed that it's done growing and will not impact her eyesight.  That it will stay it's current size and then reduce in size so that it's gone by the time she's ready to enter school.  These are all very hopeful scenarios so please keep the positive thoughts our way.

I know at this point there are so many worse things that we could be worrying about. But she's my baby and I love her and want everything in her life to be wonderful and perfect - and I hate that she has yet another thing to deal with.  We have finally gotten her acid reflux under control, so I guess this is just the next hurdle.

So, I guess after all this I just have to tell everyone to be your kid's advocate. While I like our pediatrician and still trust her - I had a gut feeling that I should dig deeper with this issue.  And I'm truly glad that I did. Now we know that there is the potential for very serious eye issues and we're watching it instead of waiting until it's too late.

Do what you need to in order to provide the best care for your child.  A doctor is someone to be trusted, but you also need to follow your parental instincts. Do what you think is right because your opinion is just as valid as your physicians!