3 yr daughter lower lip hemangioma surgery , advice please - Vascular Birthmarks Foundation Forum
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Old 06-18-2011, 05:28 AM
Kdiperi Kdiperi is offline
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Join Date: May 2011
Posts: 9
Default 3 yr daughter lower lip hemangioma surgery , advice please

Since our daughter has been born she had developed the H on her lower lip. We have been going to CHOP in philidelphia and we were originally seeing dr. Karen Shah as our , she was always very friendly and amazing with Brielle and treatment . It had ulcerated pretty bad and had left a pretty deep scar on her lip . She was on steroids for a while which did stop it from growing out of control . now fast forward three years later and we went in for the first debulk operation which was performed by Dr.David Low in CHOP. Here is re I would really appreciate from feedback please . See we brought her home the same day , she had the entire scar removed and a good portion of the he ago make removed from under the skin. She had about 16 stitches through out to put the lip back . She looked great ! She had a full lip again , no scar and the H was alot lighter and flatter. About 7 days later the entire incision started to open from the bottom up , it had reached the top portion and a hole appeared and I had called the surgeon and he stated to put a bandage across the lip to help support and hold it together and to let it heal as this is normal for lip hemangioma surgeries that are perfomed on the lip that they sometimes do open up like this . About a hour later the entire thing opened like a zipper and she had a gapping hole in her face . It bled for only a minute or so but it w a very watery blood clot looking blood . I called the surgeon back again and he said he will see us right away the next morning , he told us to put neosporin on it and but the bandages across to hold it together and allow it settle down.he stated that the blood that did come out was whatever blood clot tissue was left in the hemagioma and the body was purging it out . He stated that this is a common occurrence with this type of surgery .

We went to his office and he had examined her. He said we literally have a waiting game now because the area was trying to heal very quickly and that the tissue on both sides of the lip area were regressing and tightening up causing stress on the incision and that with it being on the lip that the normal mouth movement was also causing stress which had caused it to pull open. We have another appointment on the 24th with him to see where we stand . Cuse as of right now my daughter hAs the entire left side of her lower lip gone and the right side center inflamed and swollen . The surgeon stated that he can't try to pull it together and restitch it because the tissue is too soft and damaged now from it pulling apart , that he needs to wait so he can reattach and fuse the area back together. She constantly just uncontrollably drools and when she eats or drinks sometimes it falls out . It's very very hard mentally for all of us . We can't figure out if this is something of the common with this kind of surgery like he stated , did we do something wrong , did he do something wrong ?????? Please any advice

I have photos I can upload for a better idea if needed to help
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