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ewilliams 01-20-2008 08:44 PM

Age 6-Tears about appearance
My daughter McKenna is now 6. She was diagnosed with infantile hemangiomatosis. We went thru Resp distress with a subglottic hemangioma, Bleeding from one in her stomach or intestines, we never did find it. And many months of high dose steroids, which controlled her extensive facial and eye lid hemangiomas, but left her tiny for so long(16lbs at 18 months old). We even had fully tracheoplasty to remove it from her airway after CO2 laser failed to control its growth. McKenna was blessed to come out of this a happy normal 6 year old. But I have recently been faced with a new set of issues. The hemangioma that covered nearly half of her scalp on the right side has receded, but her hair grows very thin and very slowly where the flat vessles remain, and she has a scar on her upper lip where her hemangioma ulcerated when she was little. She is occasionally upset about her appearance, and wants to know why she can't have pretty braids or other hairstyles that her classmates have. And some of the kids have been asking about her lip and teasing her. Any insight, any medical interventions, any ideas where to go from here?
i understand that these are strictly cosmetic issues, and that i should just be thankful that she is ALIVE, but I don't know how to explain that to her.

missy 01-20-2008 11:26 PM

I don't think any of that sounds cosmetic! While she is blessed to have come through all of that... gee whiz. What a strong family life you must have made!!

Where are you located? Maybe there are some medical interventions available.


ewilliams 01-21-2008 06:10 PM

We are in El Paso, Texas. I have spent a lot of time in the past in Houston with Dr.Denise Metry, and Dr. Edmonds took care of her airway surgeries. I think Dr. Metry has said that they could remove the scarred area to her rear scalp, but that won't cause her hair to grow in thicker or faster. I have even considered signing her up for a hair club, or gluing in extensions. As for her lip,i assume that there may be something that can be done later, almost like correcting a cleft lip.
Traveling to Houston is so expensive, and if you think it is difficult to get insurance to recognize and cover, just imagine when the problems ARE purely cosmetic. They covered her treatment before because her marks threatened her vision and breathing.

ems 02-02-2008 06:49 PM

Hi, I'm new to the forum and read your post about your daughter. I had a large hemangioma which covered most of the right side of my face however I did not have any respiratory problems. I'm sorry that McKenna gets upset about her appearance as I'm sure she's beautiful. When I was younger and people asked me about my birthmak or tried to tease me I found it easiest to answer them very plainly. Most people are just curious. I waited until I was ten to have surgery and it was very successful. The way my parents explained it to me was that I was special and there weren't very many people in the world like me. I'm not sure if this has been helpful to you but feel free to email me if you like.

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