I received so much valuable information on this site that I wanted to share my daughters new situation with her H. I have been in contact with Dr Levitin and we may be going into surgery later this month or in February. My daughters H started to get a dark spot which no one could really make out but me (I am always checking the H for changes) which turned a little yellow and then darker; it was the start of her ulceration. I have included in the progress pictures, one of her bleeds. I was always wondering how much blood she would lose during a bleed. At first the bleeds were drips, then got a little more and this was the worst of them. She never even woke up during this bleed. I only saw it once I stood up and saw the back of her head. (She had fallen asleep in her highchair). Each time she bleed it had stopped by the time I checked on her so I dont know how quickly it started and stopped. But there was a squirt that was about 7 inches from her head so it must have had some pressure behind it when it started. Just wanted to share what I could. Now Dr. L thinks we should think of surgery with it ulcerating and bleeding for no reason. I am scared because she is only 4 1/2 months and only 16pounds. At first he didn't recommend surgery until she was at at least 22lbs for the anesthesia but with the complications we may not be able to wait.
It's a shame you won't be able to wait until she's larger, but ... honestly, I'll bet it will be a relief to not have to worry all the time. And Dr. Levitin is tops! Any advice that Dr. Levitin were to give to me, I'd follow to the letter. If he says it will be OK, then it will be.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
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