Our First Dermatology Appointment

So the last week of July was when we finally were able to get in to see the dermatologist.  I was nervous and very protective at this point in Ayden's life.  The stares were beginning to get to me as everyone wants to peek at the baby at stores and on walks, but the questionable look you get once they see Ayden and his birthmark was beginning to wear on me.  These were adults looking at my child and then giving me dirty looks.  Seriously, just ask what was on his face, rather than give that judgemental stare.  It took all my strength in my body to not take out every person that gave me a raised eyebrow about Ayden's PWS.

I had to take a deep breath and prepare myself that people were going to stare.  In fact only two months before if I would have seen a child with PWS I may be raising my eyebrows as well.  That is when I decided I was going to take action and educate everyone.  Seriously, any one who looked at my child I took them aside and told them what was on Ayden's face.  This eventually became exhausting, however I continued to educate rather than get angry.  I was thinking at one time to write a little business card up so that I could just pass them out as I got the stares, but I refrained as I think my husband would have questioned my sanity.

So as Ayden, my husband, and I took our first trip to Denver Children's Hospital, I was ready to hear the worse.  We walked into the hospital and suddenly our baby with a PWS was no longer a big issue.  I saw families taking their children with incurable diseases around for wagon rides throughout the hospital.  Wow...talk about putting life into perspective!

As every doctor's office, we were rushed into a room, but then sat and waited.  Here I began to worry again and it took everything in my power to suck those tears of worry back in.  We met with the dermatologist and it was seriously painless.  She looked at Ayden's PWS and did some measurements of the stain itself.  She did not feel he needed to have a brain scan, as it was only on his lower jaw and chest.  She had mentions that Sturge-Weber was not a concern in Ayden's case.

Then came that discussion of treatment.  How did we want to proceed?  Laser treatment was the topic of conversation.  The dermatologist performs the treatments right there in the office to many children who have PWS.  She stated that without numbing cream it would feel similar to a rubber band snap on the skin.  When the child is six months they begin treatment and recommend to do the treatment while they are awake with the numbing cream.

At this time we had to wait to get approval for the treatments from the insurance and until he turned six months before we could move forward on the decision we chose.

Your son has a Port Wine Stain, huh?

When Ayden came into this world on May 24, 2012, I was nothing but excited to meet my new bundle of joy.  Of course after he was born, he was quickly taken to be cleaned and of course Daddy had to take a lot of pictures.  In the midst of this while he was being cleaned off, there was talk about what was on his face.  In fact I cannot remember the entire conversation as I was still in midst of attempting to recover from the quick delivery, but I do recall a confirmation from a doctor that he had a Port Wine Stain.

Here is the kicker my friends, no one said a darn thing to me about what was wrong with my baby.  So when it was time for me to take him and see him for the first time, it was my aunt that prepped me that he had a large birthmark on his face.  I was so confused and exhausted, but to me he was perfect!  No medical professional in the hospital said a word to me about my son's birthmark and I was a little upset, but I assumed in the morning someone would explain things to me.

The next morning came, and Ayden was still perfect as ever in my eyes, but no one said a word. Here I am thinking okay I know you all see this mark on his face, but can anyone inform me of what is going on here?  It wasn't until the afternoon that a rude, yes I said rude, nurse came in and talked to me like I knew what a Port Wine Stain was and that she was having discussions with the pediatrician on staff about the PWS.  Really?  Everyone is talking about my son's birthmark, but no one will talk to me about it?

Well, we left the hospital with a healthy baby boy, and I couldn't have been happier but I still had a ton of questions.  As much as I wanted to read about this condition, I refrained as I did not want to set myself into a hormonal breakdown.   I was excited when I made Ayden's one week appointment and I had a fantastic pediatrician, Dr. Dai.  He was not familiar with Port Wine Stains, but was fascinated on his birthmark and getting us the answers we needed.  I think he knew this momma was hormonal and full of questions as he treaded lightly as he could see I was on the brink of tears.  First words out of his mouth were, "It is not your fault and this is not genetic."  What a relief to hear as a mom, but then came the literature.  Dr. Dai printed off as much information about PWS as he could find and put in a referral to Denver Children's Hospital Dermatology.

Now it was time to research.  So the technical definition for Port Wine Stain is a type of vascular anomaly that consists of deep dilated capillaries in the skin that produces a reddish to purplish color stain on the face.  In basic terms the capillaries in the skin are on speed and are creating the reddish color.  Of course the color is the birthmark creates supposedly replicates the color of Port Wine, however I am a white wine fan so I have not verified this with my son's PWS yet:)

As we sat and waited to be contacted by dermatology, I did see that PWS do have direct correlation with glaucoma and Sturge-Weber Syndrome due to the location of the PWS on the face.  So then the worrying began once again and that call from Denver's Children Hospital could not come quick enough!