Vascular Birthmarks Foundation Forum - View Single Post - 5 week old has Hemangioma in Liver HELP!!
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Old 09-12-2003, 03:24 PM
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Default Re:5 week old has Hemangioma in Liver HELP!!

I have just read your post on your son. I wanted to let you know that I know exactly what you are going through. My son is now 2 years old and he has 20 external hemangiomas and several internal. The only internal organ that he has them on is his liver. My heart aches for your family. This is really hard to go through and I understand your worry and concern.
My husband and I took our son to see Dr. Milton Waner at Arkansas Childrens Hospital in June. He relieved so many of our fears. He stated that Nicolas will be fine and to treat him like a normal healthy boy. There are signs that you need to watch for: blood in the stool and urine, difficulty breathing, coughing blood - all these are signs that an internal hemangioma has ruptured. I really don't want to scare you, I look for these signs everyday, but I do want you know what to look for. What did they say about the liver hemangiomas? Are they posing problems with the function of the liver?
Also, are his external hemangiomas compound, superficial or deep? Dr. Waner explained to us that hemangiomas that resemble a mushroom (round top above the skin and a "stem" beneath the skin) don't go away by themselves. The other types do eventually. We are having surgery on Nicolas next year due to he has two of these "mushroom type" hemangiomas.

I would refer you talking to Shannon Smith. She helped us out a great deal with Nicolas and she is a God-send.

Remember that God does not give us more than we can handle - I think some days that he has more faith in me than I have in myself! I will keep you in my prayers.

Please feel free to e-mail me anytime,

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