Allison’s Port Wine Stain Birthmark

I have been meaning to write this post for a long time, but as I am lazy and haven’t been blogging much in the past year (something about having a new baby and two crazy older kids) it never happened.  But without further ado, I give you: “Is that a birthmark???”

When Allison was born I was mostly incoherent.  Something about having a human come out of you makes you reallllllly exhausted.  She was pretty purple to begin with (as was Sammy, and lots of other babies) so I didn’t really notice anything.  Those in the room that were coherent (Aaron, my mom, and Rebecca the midwife) noticed that part of Allison’s head was much darker purple than the rest.  I remember at some point my mom and Rebecca talking about it, and them both saying something about it being a birthmark.  I was really in a bad way after delivery, and for several hours after, so I don’t remember thinking about much of anything except “I hope I am not going to pass out.”

When I was more coherent (and able to hold/pay attention to Allison) someone reintroduced the idea that Allison had a prominent birthmark, and that it was likely a Port Wine Stain birthmark.  Enter internet searching, the only thing I could really do from my bed.  As it turns out, Port Wine Stain (PWS from here on out) Birthmarks are basically a malformation of blood vessels in the skin.  They range from light pink to dark purple, and do not really go away on their own like some of the other birthmarks.  They are not super common, about 3 in every 1,000 babies have them.  Since Allison has been born, new research has found some gene that mutates early in development (estimated 2-8 weeks gestation) and that is what causes PWS.  It is not caused by anything the parents did, or placement of baby in the womb, delivery, heredity, etc.

What I really wanted to know for my new sweet baby was potential health problems associated with it.  First there are a few serious syndromes that are often indicated by a PWS, especially over the bridge of the nose and a large portion of the face.  Since Allison’s is primarily on the right side of her head, much of it is covered by her hair, and extends over her ear and touches the tip of the right eyelid, and a bit down on her cheek, she didn’t seems to be a likely candidate for any of those.  That put me greatly at ease.  The only major issue left is a condition called cobbling.  Sometimes PWS can turn darker purple in adulthood and become raised and bumpy, and sometimes crack and bleed.  As you can imagine that would not be a really great situation for anyone.  Because Allison’s PWS is not a continuous patch (there are small patches of normal colored skins inside of the PWS) she is less likely to have the cobbling as an adult.  But it is not guaranteed.

One other thing I almost forgot to mention is that when there is a PWS over the eye, it sometimes causes a swelling in the optical nerve which can cause glaucoma/blindness.  Because Allison’s PWS just touches the tip of her eyelid, we had the pressure checked to be sure.  She was fine at 6 months, and also at 12 months, and since there is no real indication of problems, the ophthalmologist thinks that a yearly check of eye pressure should be fine, and that she is not a high risk case.  But we will continue to monitor.

Often times kids with PWS are treated with lasers to lighten their birthmark.  The main reason for this is to hopefully prevent cobbling as an adult, and to make the birthmark less noticeable.  Many parents choose to begin laser treatments right away, because the younger the skin, the thinner the skin, hopefully making the treatment more successful.  I want to stop here and say that I think every parent has to choose for themselves what is best for their child.  I am in no position to judge people who do or do not use laser treatment on their child.  I think that parents who choose to do it are making the best choice for their child, and those who choose not to are also making the best choice for their child.  And now I will go into a ramble of what we are doing and why.

I love my child.  I love her darling sweet face.  I love her birthmark.  She is so incredibly beautiful and always has been.  I know that I am partial to each of my children’s stunning cuteness because I am their mother, but the fact remains I think I have pretty much cornered the market on cute faced children.  I never want Allison to feel like we didn’t like her face, that it needed changed.  Because it doesn’t.  Sometimes people will sweetly tell me things like “don’t worry, it will fade” and “oh, it is getting lighter, I almost don’t notice it” and “she can always wear makeup and put her hair over it because it’s on the side!”.  My midwife even said “it’s punk rock!  I like it”.  I love/hate these comments.  I love them because people really are trying to be nice.  They are saying things they would want to hear, or think I would want to hear, and I love them for that.  I hate them because I love my child.  I love her face.  I love it just the way it is and sometimes it bugs me to hear that others “almost don’t notice it”.  I could care less if someone notices it.  It is who she is.

When she was first born we had some outside pressure to “get it lasered off”.  I know that those who said that had good intentions, but it was not what we wanted for our child.  I have heard arguments that are essentially “think of your child in elementary/middle/high school!  They will be teased!” and “would you want that on your face?”  My answer?  I hope that my amazing daughter will help others learn about people who look different from them with grace.  That she will help them mature and learn what love and being a good person really is.  I hope that if I “had that on my face” that my parents would have made me feel beautiful, that they would have taught me that I was smart, kind, funny, thoughtful, and beautiful, and that an interesting birthmark on my face couldn’t change that.  Just like I intend to do for my daughter.  Will some people be jerky?  Yes.  But there will always be someone to be rude about something.  I don’t like the idea that we all have to be the same/look the same/do and like the same things, so why on earth would it matter that my daughter had a BIRTHMARK on her that was different than other people????

(Can you tell I feel passionately about it?)

And, I should add that doing laser surgery almost always involves putting a child (or tiny baby!) under general anesthesia for the procedure, and leaves very dark marks on the face for a while after treatment, can’t go in the sun, etc.  In our mind the small potential for reduced chance of cobbling as an adult was not nearly enough reason for the many potential risks of the procedure.

I have heard stories from other parents who get a lot of weird/rude comments from strangers.  So far I have not been the target of any of these (maybe they know I will neck chop them?).  Sometimes people ask about it, mostly “is it a birthmark?”  I love to tell people about it.  My favorite is when little kids ask “what happened to her face?” because they are so innocent and sweet and just want to know because they are curious.  I love to tell them it is a birthmark and see their faces get excited when I ask them if they have any birthmarks and they realize they do too!

Allison’s birthmark has lightened a bit from when she was first born.  That is mostly because she is an older baby/child who has better blood flow everywhere in general.  When she is hot it is redder, when she is cold it is darker and purple, and when she is just right it is a light pink.

Here is a very recent photo of Allison.  You can see her birthmark in her hair, and coming down touching the outer tip of her eyelid, and on her ear and lower jawline.  Ta-da.  Cute baby with a birthmark.  It has a tendency to show up darker in photos than in real life.

My mind has kind of gone blank, but that in a nutshell is a crash course on a Port Wine Stain Birthmark.  I am obviously no expert, but it has been interesting learning about something that just over a year ago I really had no idea even existed.  If you have any questions, please feel free to ask.  No need to be shy, because we all know I’m not.