Tell Your Story
Share Your Story and Raise Awareness
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 firstname.lastname@example.org
Jillian was born on October 8, 2007. During our 3-day stay in the hospital we noticed a very small, faint pink mark below her right ear. It looked like a “pressure” mark or blotchy spot from just giving birth. We soon realized that wasn’t it. The hospital nurse calmly stated that it could possibly be a birthmark. Just keep an eye on it. We weren’t worried at all.
Jillian’s follow up appointment with her pediatrician was two days later. Her Dr. told us a bit more -- that “it looks like it could be a “strawberry” birthmark. Keep an eye on it and watch to see if it raises, gets darker, bigger, etc. After only 2-3 weeks, the mark did raise, got bigger, darker and I started to get worried and concerned.
By December 8th (exactly 2 months old) it was bright red, the size of a walnut and the folds of skin were getting trickier to clean and keep dry. This was a fast-growing hemangioma. An ulceration formed between the folds of skin by Christmas. We had to see a specialist. We were able to get in to Children’s Hospital in Boston. Unfortunately I was not happy with their approach. They had to clean Jillian’s wound and both she and I were very distraught over it. Their “wait and see” practice did not sit with me very well. I thought there must be other options? I couldn’t imagine her birthmark getting any bigger! A few weeks prior, my cousin Jeri had told me about a Doctor at the Mass Eye & Ear – Dr. Aaron Fay. I scheduled an appointment for January 2, 2008. After the experience at Children’s just days before, I was ambivalent to keep the one at MEEI – but I did. My experience was very different. I felt reassured and hopeful that I found the right place for Jillian. They explained a lot of information to me and right then and there I decided to start Jillian on steroid injections. Her first injection was that day.
It is now April 28th, and so far Jillian hasn’t required another injection. The hemangioma seems to have “quieted down”. It’s not growing, is stable, soft, and getting a bit lighter red in color. I feel more at ease and less stressed about her birthmark. Our next appointment is May 14th. I keep thinking how fortunate we are. Jillian is almost 7 months old. She is a healthy, very happy and smiley baby and her birthmark hasn’t affected her health in any way. I wouldn’t be human to say that I am nervous as heck anticipating surgery, and I hope and pray that our future road won’t have many bumps. I can only say that we hope we are doing the right thing for Jillian. Surgery is suggested between 9-12 months old. That will be our next hurdle.
I have met with and spoken to amazing parents of children who were born with larger and more severe hemangiomas. Their stories are heart-gripping, incredible, and inspirational all at the same time. We are extremely fortunate that Jillian’s birthmark isn’t a severe case, but it’s a hemangioma nonetheless.
I hope for a successful Vascular Birthmark Awareness Day on May 15th. Those who are holding special events and fundraisers -- God Bless! Thank you, VBF for the opportunity to share our story.
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.