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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
Our beautiful son Braeden was born on November 5th 2007, a healthy 7 pounds 8 ounces. He is our first child and we were totally in love from the moment we saw him. He was a C-Section delivery with a perfectly round head an beautiful complexion. Within one week from coming home we noticed 2 small red lines under his left eye, assuming he had scratched himself, I filed his nails again and kept an eye on it. When the scratch did not disappear after a few days I grew suspicious that it was a birthmark. During the next two weeks we were bombarded with emails from family members 'what happened to his eye'....'you have to be more careful with his nails'...etc............When we went in for our one month well visit the pediatrician said that it was a stork bite and that it would go away on its own....not to worry. By Christmas ( 7 weeks old) the 'stork bite' was growing and becoming raised. It now looked as if he had a black eye. I took him to a pediatric dermatologist that week who laughed me out of his office. 'It's a hemangioma.........if he was my kid I would just wait and see'.
By that point we already realized that it was a hemangioma and our research had begun. On our 2 month check up our pediatrician said 'Yup, your right, it is a hemangioma and it will probably get bigger before it goes away...but it will go away'. Although we respected and liked our pediatrician we were not convinced that this was the best course of action because it was on his eye lid. I called a friend who had a son with a port wine stain and asked if he had any suggestions for doctors to see in the long island/NYC area. He told us about Dr. Roy Geronemous in NYC. We met with Dr. Geronemous on January 21st 2008. He was very concerned that the laser (PDL) would not be affective for Braeden as his Hemangioma was too proliferated, but we tried it anyway. When we attended our follow up appointment two weeks later, Dr. Geronemous referred us to Dr. Milton Waner (who we had already read about and had contacted for an opinion). We were frustrated that the laser did not work....we were too late! We scheduled with Dr. Waner for Feb 12th 2008. Meanwhile we visited Dr. Koty, an opthamologist in long island who reported that Braeden's vision was normal but that he wanted to keep a close eye on it to insure that his vision remained intact.
On Feb 12th we were relived to meet Dr. Waner who was confident that excision could take place soon and with good results but that he wanted Dr. Aaron Faye to look at the hemangioma since it was so close to his eye. We met with Dr. Faye on Feb 14th and he agreed that the removal should take place sooner than later to prevent damage to his left eye. Our surgery was scheduled for April 3rd 2008 which seemed like an eternity away.
Meanwhile we visited our ophthalmologist again on March 17th as he wanted to monitor his left eye for changes. Sure enough, the hemangioma had grown and Braeden now had an astigmatism. Dr. Koty was confident that with surgery, the pressure on the eye will be relieved and the astigmatism should resolve. Even with the optimism it was a big blow for us. We felt terrible that we hadn't done something sooner. Our son was born with two perfect eyes and now he was developing visual issues. We tried to remain optimistic despite our fears.
On April 3rd 2008 we left for the city at 4:00 AM making sure to bring Everything that we could possibly need. Braeden was a trooper, unable to eat after 1:30, he slept the entire ride and woke up happy when we arrived at the hospital at 6:00AM. After a brief wait, we were brought in for pre-surgery details. We met the surgical nurses and anesthesiologists who assured us that everything would go just fine. Dr. Waner arrived around 7:50 and came in to take one last look at Braeden before surgery. I can't tell you how incredibly down to earth and kind this man is! At 8:00 AM We gowned up and walked Braeden down to the OR and sang to him as he was placed under anesthesia. At 9:36AM the anesthesiologist came to the waiting room and told us that everything had gone wonderfully. You can only imagine our relief! Now we just wanted to see our boy! We went to the recovery room and immediately started to cry at the site of Braeden half asleep with IVs and leads.....but.. NO HEMANGIOMA! The Hemangioma was gone, and in its place a row of 8 tiny stitches! He looked incredible.
Recovery from the anestisia lasted a few hours but by 4:00PM that afternoon he was back to his smiley self. We felt like we took our first deep breath in months. The nurses were wonderful at Roosevelt St. Lukes. We were well taken care of and were discharged the morning of April 4th. Dr. Waner checked in with us in the morning and thought that everything looked great. We joyfully left the hospital!
The stitches were removed the following Thursday by Dr Levitin. It was a quick procedure with a light anesthesia. Again, Braeden did fantastic and he looked better than ever!
Braeden is 6 months old now and he has a small piece of red skin left under his eye where Dr. Waner and Dr. Faye removed the hemangioma. We will have a laser treatment in the near future to 'zap' the red skin as Dr. Waner refers to it. The hemangioma is gone but it will never be forgotten. This experience was a bumpy ride of emotions but we feel in the end so very blessed to have incredibly gifted and caring doctors who had the expertise to remove the hemangioma and save our sons vision.
Karen, Drew and Braeden Martella
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.