When Vail was born no one wanted to tell us that his facial difference was a birthmark; some said a bruise and some said it would go away eventually since it would blanch. His birthmark is in the V3 area on his right side on his lower cheek/jaw and up into his scalp and then a very small patch on the other side of his cheek.
After a month went by, we finally got a referral to a local dermatologist that took pictures, but needed to talk with a colleague to see where to go next with treatment. Frustrated with no clear answer, we turned to an out of state children’s hospital who confirmed his PWS, but could not get us in for laser until he was 7 months old. When we were two weeks away from our first treatment, we got a call that our insurance denied our treatment even after a peer to peer phone call with our doctor. They then quoted us in writing that out of pocket, his laser treatment would cost $415. So we waited another month, when Vail was 8 months old, to get back on the schedule for treatment. Treatment went well, but they immediately came back with him and told us that he will need to be put under anesthesia from here on out. That is not what I wanted to hear. We wasted months waiting for the quick and easy treatment they do on newborns, and now they wanted to put my little guy under for what takes just seconds. Weeks later, we were stuck with a $6000 bill for just one laser treatment with ZERO G.A. We needed help.
I went straight to Instagram and searched port-wine stains. I found an account called Leo’s Birthmark and started chatting with a fellow PWS mama about her son. She sent me straight to the VBF website, and I soon got a call from Dr. Linda who changed our path FOREVER!
After speaking with Dr. Linda, she advised me to come to the 2021 NYC VBF Super Clinic to get Vail a proper diagnosis. I called my husband and we booked our trip that day. I was blown away by all they did for $100 donation, and all that they did to ensure that we got there during the pandemic. Vail was 10 months old when we went to the super clinic and he received his then 2nd laser treatment from Dr. Geronemus, we spoke with Dr. Comi and Dr. Pinto about SWS, and we met with another doctor who is an expert with dentistry to look into Vail’s mouth. They all gave us time to answer any questions, and they gave us lots of advice on what to look for in the future, along with their contact information. We also met some VBF ambassadors that are now our friends.
We left this clinic relieved, we left as a new patient under Dr. Geronemus (Vail has now had 9 total), and we left with a new community at our side. We finally felt heard and understood. I still cannot believe how welcoming and helpful everyone in this foundation is and continues to be.
The monthly Facebook lives are outstanding to listen to and to be able to ask questions to the best of the best in this field is unheard of. I learn from them every time I participate.
Vail and I are now global ambassadors and we are also on the fundraising committee. We are determined to give back to VBF and spread lots of awareness. My goal for every child or adult with a vascular birthmark is to be able to find a FAST and ACCURATE diagnosis, and for them to also be educated about their birthmark so they can make the best decision for their family, no matter their location in the world. With the help of VBF, this is possible!