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
07/02/2007 Ava was 4 weeks early today born at 5 lbs 1 oz, 17 and ¼ inches long. She has a large bruise on the crown of her head, probably from sitting on my pelvic bone so long. She also has a bruise on her right arm. Extends from shoulder to inside elbow. Drs said these would go away in a few days. She looks just like her daddy and she’s so small.
08/02/2007 Ava’s right arm has now turned a reddish color. Dr said it is a birthmark or stork bite. No need to worry. Should go away as she gets older.
09/02/2007 Ava’s arm is now bright red and raised slightly. We found a small red spot on the back of her neck. Thought it was a mark from a button on clothing. Dr looked over and doesn’t seem to be worried.
10/02/2007 The birthmark is considerably larger now, and at bath time one night, noticed that inside the crease of the birthmark has turned raw and filled with puss. Dr has referred us to hematologist. Dr Bayliff gave us antibiotic ointment and a topical cream and we are supposed to wrap it after applying cream. It’s very tender to Ava. Shirts no longer fit for her age and we have to put 2t shirts on her. Large veins in her right chest run to this arm and seem to be feeding it.
11/02/2007 Getting even larger now, so large that every time one ulceration heals, another comes up. Still doing the cream and wrapping. Very frustrating getting her dressed. It’s very tender to touch. The one on the back of her neck is getting larger too. About the size of a nickel. Dr Bayliff just wants to watch it to see what it will do. The color is not as red; there are a few grey spots, which indicate involution. Doesn’t want to do any surgery or laser. Not until closer to school age.
12/02/2007 The hemangioma has grown too much. Now starting to creep onto the inside of her arm and so large that it’s tight and looks as though it’s going to burst. Dr Bayliff has started her on 1 and ½ lm of prednizoloan twice a day to see if we can reduce or stop the growth. Buying clothing is frustrating, nothing seems to fit unless its 3 sizes too big. She wears her brother’s shirts a lot. 2t! Cant handle the meds twice a day, vomits a lot and makes her gag, bringing it to just once a day. I jumped on a website called the vascular birthmark foundation and have talked to several mothers about Ava’s arm. Was contacted by Sherri Foster who wants to send her pictures to a surgeon in NY. Dr Levi tin has emailed me to let me know that he feels that she needs to have surgery. The first one will be laser to close the ulcerations and then two more to de bulk.
01/02/2008 She’s even more moody now than before, which is hard to believe. Her appetite has actually decreased instead of increasing. The steroids are making us all crazy! Her ulcerations have healed!!!!! Knock on wood that they don’t come back. Dr Bayliff doesn’t think that surgery would be good for her right now. Not enough good skin to close the arm back up if it’s removed now. We are decreasing the amount of steroids to 1ml a day now and the color closer to the elbow has almost turned all fleshy. The hemangioma is a lot squishier now. And doesn’t seem to bother her as much when you touch it.
01/07/08 Dr Levitin sent me an email today to let me know that he had talked Ava’s case over with Dr Waner and that they both feel that since her arm has healed that surgery will start around 1 year of age. A little disappointed that this is not happening sooner, but he knows best. Seems like an emotional rollercoaster. Sherri foster advised me that his nurse would be calling me soon with more details of why they want to wait.
01/09/08 Pediatrician appointment today. Dr Dearinger is pleased with Ava’s weight and development. No live vaccines today since she’s on the steroids.
01/12/08 Dr Levitins nurse called today. Jana. She explained to me in detail why they wanted to wait until she was older to do the surgery. Now that her ulcerations have healed, she is in no pain, and there is not enough good skin to close up the incision right now if one was made. Waiting in hopes that the involution process will take place and there will be more good skin to use at that time. She has suggested and EKG since her heart may be working harder to produce the blood to supply the h. we will talk to Dr Bayliff.
01/16/08 Meeting with Dr Bayliff today went well. She feels that her arm has not grown in girth, but that she could tell that the color has started to turn more red, and that the puffiness has gotten bigger. The h (hemangioma) is not as flat as it was when we were on full steroids. She has decided to put her back on 1 and a half ml once a day until we go back on the 31st. we have agreed that I will keep pictures each week and email them to her to let her know if its going back down. If it is then we can more slowly than the last time bring her down. She thinks that maybe we cut the dosage too much each time that regressing more slowly will keep it from rebounding again. She has also suggested First Steps to evaluate her to see if she may need occupational therapy to strengthen her arm. Can’t wait for this to happen. She has suggested to only put lotion on the arm and in the crack to keep it moist to prevent ulcerations. Also ordered an EKG. Results were normal. Yeah!
01/31/08 Kevin took Ava to Dr Bayliff today. We are all pleased with the outcome of the H. The steroids seem to be shrinking the underlying structure of it causing it to appear larger, when in fact its actually just sagging more. Dr is happy with the changing in color and seems to think that we can start to decrease the dosage soon. She did find a small raw spot under the hemangioma near the crook of Ava’s arm where its sitting on her forearm so much and rubbing and wants to stay at the current dosage of steroids because of this. We are to put the creams on three times a day to see if we can get it to heal. She has contacted Dr Adams at the Cincinnati children’s hospital and both still agree that waiting a little longer would be better for Ava, but its up to us. I think waiting will be a good idea so that we can minimize scarring as long as Ava is not uncomfortable. And she doesn’t seem to be so far. I sent photos to Dr Bayliff over the last few weeks so that she could keep track of her progress and she sent them to Dr Adams. First steps will be coming on Friday to evaluate.
02/04/08 Over the weekend seems like Ava’s raw spot has gotten worse. Seems to be more puss filled than before and definitely more tender and bothersome to Ava. She’s been grumpy for several days now. Not like her at all. We gave her Tylenol last night to help with the pain. After applying the ointments we wrapped it. This morning when taking the bandage off, she didn’t cry much, and I wrapped it back up after cleaning and applying ointment. I asked the babysitter to take it off today and put more cream on. Got a phone call from her this afternoon saying that Ava was really fussy so she took the bandage off and it had bright red blood with it. She said she got some cream back on it, but that Ava was very upset about it. I have emailed Dr Bayliff about options. This little raw spot concerns me. It’s very similar to the ulceration that started in the crease of her bicep. What I don’t want to happen is that we just wait to see if its going to heal on its own again, and Ava will be in pain for 4 months. In talking with the nurse at the CCHMC she said that laser might be an option to help this heal so that it doesn’t get worse. I will wait to see what Dr Bayliff will say.
02/07/08 This week has been miserable trying to keep her arm comfortable. Putting the cream on three times a day, and sometimes the clothes stick to it and she screams. She screams even when you just touch her arm because she knows what your about to do. It has been so stressful. Cant wait to talk to Dr Bayliff tomorrow. I have made an appointment with her since I have not gotten a reply on the email.
02/14/08 We have an appointment on Tuesday in Cincinnati! Hopefully we can get things going and get it resolved.
02/20/08 The visit with the surgeons and drs at Children’s went great yesterday. They are very pleased with the way that the H is looking with her on steroids. They think that it’s starting to involute quickly. There were 2 surgeons and several drs that looked at it yesterday. They said that they could take it off now, but if they did it would leave a much larger scar and more risk of infection. We have all decided to wait until Ava is about 2 years old to remove. This way there is more good skin to use to close back up and the scar will not be as large. They are however going to do laser treatment on the part that is ulcerated on Tuesday the 26th at 11am. This will help the ulceration heal and prevent Ava from being in anymore pain with it. There is a possibility that it might take more than one treatment to get it to heal depending on how deep it is. But they said that anytime it ulcerates, that we can come back and do it again to keep her from being in so much pain waiting on it to heal on its own. This is the answer to my prayers. They also gave us some lidocain to put over the top of the ulceration to numb the area until the laser treatment. They are wonderful there and I am really excited about working with them. Dr Bayliff has been so wonderful here and I am very thankful that she recommended Cincinnati. First steps came out Friday to evaluate Ava again. This time it was a developmental therapist. She said that Ava is doing very well for her age. That there are no real concerns with her development. She does however need some therapy for her neck muscles to help her raise her arms to hold her own bottle. She will come one to two times a month, and that was all she thought she needed at this time.
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Tyler Salvador and his twin sister, Shaine.