The feelings were overwhelming. This new information and the guilt. Thinking to myself “Is this something I caused?” “Why is this happening to us?” “What do we do now?”.
Nowadays kids seem to be so hard on other kids that are or look different. How could I ever send my daughter to school? In my eyes I knew my little girl was perfect, her birthmark only made her more special. But my heart was hurting knowing one day she’ll have to face the world on her own.
The day my little girl was born I was so happy to finally get to hold her, I didn’t notice the dark red spots covering the right side of her face. They told me it was probably bruising or a stork bite. Which is a type of birthmark that fades on its own and is common in newborns. In our case days went by and it didn’t go away, so we decided to see a dermatologist and he confirmed it was a Port Wine Stain.
What Is a Port Wine Stain birthmark?
Port Wine Stain is one of many types of vascular birthmarks also known as “Angel kisses”. An easy way to explain it, especially to kids, it is to imagine our veins being like spaghetti, angel hair type and very skinny, opposed to a Port Wine Stain where veins are fat like a fettuccini causing the skin to look red and bumpy. This birthmark is present at birth and it could happen to both male and female. They are progressive lesions which means they can grow thicker and darker with time. It rarely fades without treatment, and the sooner it gets treated, the better chance of a healthier looking skin. We started the Pulse Dye Laser treatment at 8 weeks old, the bruises are perfect little dots that cause people to stare and the most uncomfortable questions you could ever imagine.
Please, Be Kind with Your Words
The first of many times I had to deal with questions and comments, I left a local store in tears. A lady approached us to see the baby, and she probably didn’t think her words hurt me as much as they did. First, she asked me if I had burnt her or if she fell on her face, I politely explained her birthmark and the treatment dots. I still remember the smirk on her face and the hand on her waist while she asked, “Did you eat something you shouldn’t have while you were pregnant?” Even though by then I knew it was caused by a mutation on the GNAQ gene and of course It wasn’t my fault, I couldn’t find my voice to answer and I just walked away. That day I knew I had to grow a thicker skin and made sure my daughter grew up knowing how beautiful she is no matter what.
Things didn’t get easier, at 8 months old, we had to rush into the ER; the left side of her body was twitching. We had no idea what it was, later we found out it was a seizure and many more would follow. These were the most surreal days and the longest nights of our lives. The CAT scan showed a cyst on the left side of her brain and we were sent in a life flight to Salt Lake City. An MRI confirmed the cyst but also showed calcifications on her brain; the reason was a rare disease called Sturge-Weber Syndrome. In many cases, this syndrome causes birthmarks like my daughter’s. Sturge-Weber can also cause seizures, in 30 to 70 percent of the cases glaucoma, developmental and motor skills delays.
Sturge-Weber Awareness
After 2 weeks in the hospital, her seizures were finally under control, now her care team consists of preventive therapy, a neurologist, an ophthalmologist, a dermatologist and a family that loves her immensely and is willing to do even the impossible for her to have the most normal life she can. Researching and working towards educating our community about her condition (which less than a year ago we did not even know it existed!) we found support groups and foundations to help us connect with other families in similar situations. Through them, we found out that in 2004 former congressman John Sweeny declared May 15th as the Vascular Birthmark Foundation International Day of Awareness.
There is no known cure for Sturge-Weber, and we do not know what is ahead of us and as hard as it can be at times, we embrace every part of our journey. Victoria came to change our lives; we are happy to have such a strong yet sweet little girl to call our own. As a parent, I encourage you to make a difference and help me change the standards of beauty, let’s redefine what “normal’ is and teach our kids it is ok to be different.
By Guest Contributor: Maggy Johnson
Maggy worked for 7 years as an architect, and moved to Idaho Falls. She is now married to an Idahoan, and taking a break from her career to raise her little girl.
