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How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at awareness@birthmark.org

Featured Story

River’s Story
By: Sarah Jankowski (River’s Mom)

On January 30, 2005 my husband, 16-month old daughter, and I welcomed our new twins into the world. At the time my biggest fear was how to balance three babies and how to afford it.

River MuellerRiver was born first and as I was still delivering Raine, I could hear the doctors talking about something to do with her skin. I could hear a little bit of fear in my husband’s voice as he talked with them, but I didn't think much about it right then. I thought she probably has a little birthmark, not a big deal. Once both babies were together and being cleaned up, I turned to see them and what I saw shocked me…bright red patches all over the right side of her body – her chest and the area under her arm and around her ribs, her entire right arm and hand, multiple patches on the right side of her back, and down the back of her right leg-some creeping around to the front of her upper right thigh. We had no idea what this was and we were scared.

The doctors did some tests to make sure her organs were functioning properly and thankfully they were. Once things settled down, the doctor told us he thought River had port wine stains, and that he was going to make an appointment for us at Children’s Hospital Dermatology Clinic. River was only a few days old when we took her. It was there that we learned more about port wine stains; the scariest being that the portions of her body that had them could grow at a more rapid rate than the rest of her body causing her arm and or leg to be longer than the other side. We also learned of the laser treatment that was available and that we would be able to start when she was one year old. We weren’t sure whether we should do it or not, but it was a decision we had a whole year to think about.

Over the next year, we had several encounters with ignorant people, mostly children and older people questioning “what happened to her?” We saw a pediatrician that called her a “regular Picasso”. I was interrogated in the ER about her body and what was “wrong with her” when I took her in for hitting her head after a fall. These encounters paired with River’s personality quickly developing into a beautiful happy girl brought us to the decision of going ahead with the laser treatment. We love our little girl, and don’t even notice her birthmarks; however we are not naïve and know how cruel kids (and people) can be. One our biggest fears is that she would go to school on her first day as our happy little girl, and come home hating everything. We thought that if there was anything we could do to make her life a little easier, than we had to at least try.

She was a year old we she had her first procedure. We decided at the time to just work on her chest and arm. After seeing the progress after the first surgery, I was very confident that it wouldn't be long before we'd be done with her chest and arm and could move on to the rest of her body.

River MuellerRiver is now three and just had her 7th procedure on her chest and arm and there’s still a lot more to be done. She’s fully aware that she has birthmarks now and that all people are different. She loves her birthmarks, and gets excited about her “operations” because she gets ice cream afterward. I just ordered the Buddy Booby’s Birthmark book to help us educate her about some of the things she will go through.

We’ve also decided that once her chest and arm are finished, we will not move onto the rest of her body. We will leave that decision for her when she is older. It’s hard to have to put her through this procedure repeatedly at such a small age. I’m constantly worried about the long-term effects the anesthesia and the procedure itself may have on her. With every upcoming procedure I second-guess my original decision.

I really don’t have an end to our story, as we still have many battles ahead of us. I know we are very lucky River is a healthy, happy girl and that her birthmarks aren’t affecting her health in any way. I also know that she has a long hard road ahead of her as she grows up.

In the last few months, I have found myself on the VBF website more and more, reading about others and researching. I’m am thankful that I have so much information in one place and I hope to help in any little way that I can to keep it going.