Vascular Birthmarks Foundation Forum - View Single Post - TearJerker, read with caution please seriously
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Old 03-22-2005, 03:34 AM
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Default Re: TearJerker, read with caution please seriously

I wish I knew your name so I could put it in here. I have just read your email and am devastated. It sounds very much like your daughter had a hemangioma that became problematic or possible kaposi form of hemangiomaendothelioma....these are hemangioma type lesions that grow and begin to consume the baby's blood and the child gets very, very sick, if untreated. One day they seem fine, and then they don't make it. The mortality rate with hemangiomas is due to either an airway hemangioma, liver hemangiomas or this rare type of condition...also called Kassabach Merritt Syndrome. Eighteen years ago so little was known and even today there is still little known. But, rest assured when God gave me the "charge" to start VBF and to change the medical community regarding this subject, I took it seriously. We have distributed a medical textbook to every medical school in the US, we have established guidelines for referring infants to a specialist, we have promoted physician education so primary care docs like the one your daughter saw 18 years ago would know what these are and who to refer the baby to. The American Academy of Dermatology is on board with early intervention and we are working hard to get the American Academy of Pediatrics on board. I can only tell you that I am so very sorry. I am also a twin. Please feel free to call me directly at 877-8223-4646 (evenings, eastern time) if you need to talk about this. Now everyone knows why I can never stop doing this work. I was at Albany Medical Center this weekend with a friend who has a daughter with an airway hemangioma. She is only 2.5 months old. Her airway was almost completely blocked. The surgeon was able to surgically remove the hemangioma. In the past, it would not have been attempted and she would have possibly had a trach but more likely she would have died and they would have said it was SIDS.

Thank you for sharing your story. Please accept my sincerest condolences.

Linda Shannon
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