Share Your Story and Raise Awareness

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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

Chloe's Story

Chloe at three months Chloe was born on January 3, 2006. There was no evidence of her hemangioma at birth, or for the first 4 weeks of her life. Then, when she was about one month old, we noticed a circular area of tiny red dots just to the right of her nose. Within a week, we noticed swelling in the area underneath the dots. I had one of my relatives, a family practitioner, look at Chloe and he said Chloe probably had a hemangioma. I had previously seen a show where Dr. Reinisch in Los Angeles had removed hemangiomas from children and I was shocked that Chloe’s cluster of tiny red dots could turn into such a huge birthmark.

I took Chloe to her regular doctor the next week and he got us into the best plastic surgeon in our area. By that time, the hemangioma had continued to grow and was now pushing Chloe’s nose to the side and threatened to impair the line of sight from her right eye. At our first meeting with the plastic surgeon, he made the comment that “it was too bad that a pretty little girl’s face was going to be distorted.” His belief that this was going to be a lifelong, deforming problem shocked me into action. I just couldn’t accept that the best that modern medicine had to offer was to sit by and watch my daughter’s hemangioma grow.

As soon as we got home, I immediately got online and started doing some research. I stumbled across the VBF website and read about treatments that could and should be done early to control and even remove the hemangioma entirely. I was so relieved that there was something that could be done to help Chloe! I had my relative submit a question to the VBF via the physician’s question area and Linda Rozell-Shannon contacted him almost immediately. I spoke to Linda the next day and she discussed potential treatment options and forwarded Chloe’s pictures to Dr. Waner. Dr. Waner emailed me back in a couple days saying he could easily remove Chloe’s hemangioma with surgery, if that was the route we wanted to go! I had also emailed Dr. Reinish and he called me back and suggested we try steroid injections before surgery. I wrote down the steroids he suggested we use and faxed that information to Chloe’s local plastic surgeon.

Chloe at eighteen months On our next visit to the plastic surgeon, we insisted upon the steroid injections and he was happy to try that course of treatment. Over the course of the next few months, Chloe had 3 -4 treatments with the steroid injections with amazing results. Chloe had professional pictures taken when she was 7 months old and the hemangioma was barely visible. She did have a bit of a rebound when she was 11 months old when the hemangioma appeared to be growing again. However, we got her back in for one final round of steroid injections and that took care of the problem.

Chloe at three years old Chloe is now 3 years old and there is virtually no sign that she ever had a hemangioma. If you look very closely, you can see a very slight asymmetry between the right and left sides of her nose/cheeks, but it is nothing anyone would see if they weren’t looking for it. We are very grateful that we found the VBF and got Chloe’s hemangioma taken care of so quickly. We have done our best over the last few years to tell as many people as possible about the website and the possible treatments of vascular birthmarks. Hopefully, all children will receive early and appropriate care in the near future!

Amy, Chloe’s mom