The Vascular Birthmarks Foundation

Dr. Linda Rozell-Shannon, PhD President and Founder

My husband and I had our baby girl Emely in August 2014. We were so excited for our little girl to be born. We had had such a complicated pregnancy and at some point were told by the doctors that they didn’t think she would make it. Thanks to our prayers, God let her make it to the day we had all been waiting for — her birthdate. When she was born, right away we knew something was wrong. The doctors didn’t let us see her right away and took her away to examine her. Shortly after they called my husband and explained to him that she had been born with a birthmark and that’s why her right side of her face was purple. I saw my baby girl and just cried with both happiness and confusion.

Doctors did tell us that it was just a birthmark and that we could get more information about it with a dermatologist. Before we left the hospital, we had a few doctors visit us. We soon found out that this was a birthmark that caused glaucoma and Sturge Weber Syndrome. We were just so confused; our baby was being diagnosed with things that we had never heard of. We were so worried about what this could mean for our baby.

Our Emely had her first treatment near her eye at 5 days old. We were mortified, scared, and didn’t know much about this or how this happened. After months of research, I found Dr. Nelson. We made an appointment and were so happy with him and his staff. They were very informative and helped open our eyes that we were not the only family out there with a baby with a similar birthmark. When we found out about the annual conferences, we were introduced to VBF, and it was the best thing ever. As a parent with a baby diagnosed with something that you are not too familiar with, at least for us, it was important to find other parents who have been through the same. I was having a hard time adjusting to the surgeries and just my daughter being different. Once we scheduled Emely’s first treatment with Dr. Nelson, I reached out to a parent who had been through the same. I found a family with a little boy who started treatment at the same age as Emely. I spoke with the mom and she reassured me that everything would be okay. She said Dr. Nelson was the best possible doctor for Emely. She sent me some before and after pics of her baby and told us that Emely would get there too.

It is very important for me to share this with any new parent out there who has a child with a birthmark. Because just like I had a parent comfort me and tell me that everything would be okay, I want to be able to do the same for another parent going through the same thing. I want to be able to help other parents see that being different is amazing. Our little girl may be different because of her birthmark, but she is an adorable baby. And we love to share her with everyone. VBF has helped us see that there is a beauty to all babies who are born different.

I thank God for VBF; it is such a great resource and I encourage everyone to share this website with as many people as they can.