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
When Sarah was born they told us that she had a birthing bruise on her face, and that it would go away within a few days, the very next day we were told that what she had was a port wine stain and at her first doctors appointment we were referred to a dermatologist. We went to the dermatologist and he walked into the room, looked at her and said yep, its a port wine stain, don't worry at one year of age we will remove it and have no problems, it takes 10 years to have any growth to it at all so don't worry! Then he sent us on our way.
Two weeks later Sarah had a thickening above her eye and swelling in front of her right ear. She had already seen an eye doctor to determine glaucoma, so being it was affecting her eye we took her to her eye doctor, dermatologist, and ped. in one day, the eye doctor said everything was fine, so we headed over to her dermatologist. He walked in and took a look at her and pulled his glasses down, squeezed her face, pushed and poked, then told us to go to her ped. Nothing else. We headed to her ped. and there she also did the same poking and prodding and told us she didn't know...she went and pulled another doctor in and they looked and talked and then left to go call her dermatologist...approx. three hours later we left knowing Sarah was going to have a cat scan...that's all.
A week later is when we found out she has a Hemangioma. We got more doctors and Sarah went on medicine to suppress it. They put her on steroids and other medicine to protect her stomach from the steroid. Later she was put on a third to help do the same thing. We found out who the top doctor in North Carolina was, so we decided to go see him, it was another round of being told not to worry. My husband (Chuck) and I wanted to get Sarah an MRI to determine if she had any on the inside, he said it wasn't necessary, so we then got another doctor, her hematologist Dr. Mogul to order it. He did and they told us not to worry, if there was anything there then they would call us, if not then they would call us on Monday. We got the call before we even made it home. Sarah has two more on the inside of her face on the left side that we cannot see. One is behind her left eye, and the other starts at her left ear and runs to sit beside her airway.
Once we found out this new information and talking to Dr. Mogul, we soon realized that Sarah needed more help than what we could provide for her here in North Carolina. That's when we contacted Dr. Waner and Dr. Levitian in New York. Come to find out it was the best decision we made. When we went to New York for the first time Chuck and I felt as if we were in a small boat in the ocean with a hole in the boat. We had no hope. We didn't know what to expect. But meeting those two, not only did they fix our hole, but they brought us to dry land! It was the first time we felt hope. Sarah had her first laser surgery the very next day. She was 4 months old.
Meeting the doctors we found out Sarah needed to have the surgery every four weeks to control the hemangioma. It didn't matter to us, we just knew we had to do it. Dr. Waner and Dr. Levitian discussed it with Dr. Mogul and wanted her to be weaned off of her steroid so that it would allow the hemangioma to grow so that they could get more of it during the surgeries. The night before we flew for her second surgery we had to rush Sarah to the ER, she was having a bad withdrawal from the steroid, by now she had been on the medicine since she was two weeks old. She was so dehydrated from throwing up so much they couldn't even get an IV on her to give her fluids. On the verge of being admitted, they decided against it since she was flying to New York the next day, even though we didn't know if she could still go or not. We found out that she could still travel and have surgery, so we took off, once we got to New York Dr. Waner noticed Sarah's soft spot was swollen and ordered her to go to a pediatric neurosurgeon to get looked at. He then ordered a cat scan in the morning before surgery...again we didn't know if surgery was going to be canceled. The morning of the surgery she had her cat scan and everything was normal! It was just swollen due to her being sick from withdrawal; Sarah had her surgery and everything went fine.
After we came home from her second surgery we noticed a massive increase in the growing of her face...we talked to to doctors in New York and with Dr. Mogul here, and they informed us that it was time for chemo. Sarah had four rounds of Chemo.
Present day...today Sarah has had three surgeries and we are getting ready to pack for her fourth, she has another planned and scheduled and we will then get a re-evaluation to determine whether or not we will continue to come every four weeks or be able to space it out to every six weeks. Sarah has had multiple ulcerations that have left some nasty scars but we have been told that those can be taken care of, she will also have to have some reconstruction done on her bottom lip.
Sarah is such a wonderful little blessing and we can't seem to get enough of her and her 100 watt smile! We know she has a long road ahead of her but we know she will make it and we will be there right beside of her! This is Sarah's time line, a breakdown of all she has had done and gone through. If you would like to continue to read and follow Sarah's progress you can go look at her web site at http://www.porkchopsarah.blogspot.com/ Thank you for supporting the Vascular Birthmark Foundation and reading about Sarah!
Kim and Chuck Porter.
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.