We Waited--with AMAZING results! - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-23-2011, 03:31 AM
crofte crofte is offline
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Talking We Waited--with AMAZING results!

I posted on here last in 2009, distraught with deciding what to do with our baby girl, who had a deep hemangioma on her eyebrow. Here is a picture of her on May 30, 2009, at nearly 4 months old:



I could not decide if we should pursue treatment or not, particularly as I was afraid that the bump would get bigger and bigger, since she was so young. I contacted Dr. Waner and Dr. Fay, both of whom encouraged either surgery or propranolol (sp?). However, because of the distanced that would be required to travel, we were limited by funds. I was, initially, quite fearful that the bump would harm her vision in some way, especially because Dr. Fay's office informed me that this was a real possibility. However, I took her to a local opthamalogist who said that it was not be impacted in any way. A few months later, after much waiting and debating, my husband and I made the decision to visit the Denver Children's Hospital and attend their vascular malformation clinic. They confirmed that her vision should not be affected, as long as the size remained the same, and reiterated that we should wait. They said that, by age 5, involution would begin and she would probably be H free by age 10.

We only had to wait about a year more. Here she is at 15 months:



Now, at 26 months--IT IS COMPLETELY GONE!!!

I realize that this is not how all hemangiomas work, but I wanted to let worried parents know that, sometimes, waiting REALLY does work. It goes against our nature to see our kids disfigured and stared at without wanting to do our best to make the situation better, but, in retrospect, I am SO glad that we waited and did not put our precious baby through an unneeded surgery.
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Old 04-23-2011, 02:50 PM
missy missy is offline
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Hi and welcome back!

Your daughter looks amazing! I'm glad things worked out so well for you. Many times, waiting is the right choice. Usually, the people who do wait and see may never end up here to tell their stories!

Thank you so much for posting the photos and your story. It will help other parents so much.

Missy
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Old 04-24-2011, 12:43 AM
smurph smurph is offline
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Wow! She looks great! It is great to hear stories like this. You are right...it is really hard to wait and it is good to see that sometimes waiting really is the best thing. It's good for parents to see both sides. Two of my daughters have had fairly significant hemangiomas...one was treated with steroids, surgery and laser and the other had no treatment. It is amazing to see the results on each of my daughters. So in a way I have had both experiences...of treating and waiting and both have had their pros and cons. I'm so glad it worked out so well for you! She is so cute!
Shannon
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Old 04-27-2011, 01:38 AM
nickbar nickbar is offline
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Thumbs up. I agree with Shannon, it is so helpful for parents to have all options and hear stories for each path! Thank you so much for sharing your story.
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Old 04-28-2011, 10:11 PM
lizzyh lizzyh is offline
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So happy to hear your daughter is doing well! We took our daughter to Childrens Hospital in Denver also several times last year. We saw Dr. Morelli and really liked the nurses and dr's there. We live in Wyoming.
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Old 05-01-2011, 02:29 AM
crofte crofte is offline
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Quote:
Originally Posted by lizzyh View Post
So happy to hear your daughter is doing well! We took our daughter to Childrens Hospital in Denver also several times last year. We saw Dr. Morelli and really liked the nurses and dr's there. We live in Wyoming.
We're in Nebraska! We went to the vascular malformation clinic, so we saw Dr. Morelli, Dr. Ketch, and Dr. Peggy Kelley (and about 20 students!!) all at the same time. They really calmed our fears, so it was worth the 4 hour drive!
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Old 05-23-2011, 12:04 PM
Anniina Anniina is offline
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Really uplifting to hear this story! Congrats
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