If you have been around here awhile, you probably remember when my post about Charlie’s hemangioma went viral. In fact, that may be how you found me. That post generated buzz that quickly spread around the world. Charlie was seen on The Today Show, Inside Edition, Fox News, Good Morning America, and featured in Cosmopolitan, Redbook, Good Housekeeping, Yahoo!, The Huffington Post, and many other news platforms.
Very quickly, I was met with a range of reactions. (I wrote about that in more detail here.) However, the most amazing part was being connected to literally hundreds of other hemangioma parents around the world.
I received emails from moms and dads in many different countries in many different languages. I was encouraged by adults who had a hemangioma as a child. The experience was a wild ride, but I am so thankful that even a few other people were assured through my writing that they were not alone.
Here are some screenshots of some of the most touching emails I have received.
Needless to say, I have also had an array of questions over the last year. I still get several messages weekly via social media and my blog. Naturally, people have fallen in love with Charlie and are curious about her progress. Not only that, but I have found that there is limited information out there on hemangiomas. Therefore, many parents contact me looking for answers or guidance Since it’s been a year since I have written about it, I wanted to circle back and give an update along with some resources I have found along the way.
As a recap, Charlie was diagnosed as having an infantile hemangioma when she was a few weeks old. (Again, I explained all of that in more detail in my original post.) Immediately after birth, it was flat and pale, so the doctors initially thought it was a port wine stain (another type of vascular birthmark). As the days went on, we realized it was a capillary hemangioma. The progression was rapid. Here is a photo of the change from birth to six weeks:
At six week, Charlie started propranolol, a beta blocker used to treat hemangiomas. This kept the hemangioma from growing further and obstructing her vision or causing any kind of muscle damage. When she was about six months old, she got sick, so we held the medication (per orders). We noticed that the proliferation had stopped (meaning it had stopped growing on it’s own). The next phase a hemangioma will go through is involution. Unlike some other vascular birthmarks, infantile hemangiomas will inevitably “reabsorb” into the body and fade away over time.
At that point, we made the decision to hold the medication indefinitely and allow her body to continue the process. It’s so remarkable the changes that have been made. I see her every day, so I forget how much it’s faded until someone comments on it.
Here is a photo that shows the progress from 6 months to about 16 months:
Charlie is 18 months now, and her cheek continues to get lighter and softer. We still get remarks, we still get questions, and we still hear opinions, but it’s all part of her story. She’s still a beautiful, dynamic little girl, and we have zero regrets about how we have handled anything that has come with her unique face.
If you are a hemangioma parent, I can’t recommend the Hemangioma Parents Group on Facebook enough! Researching journals and case studies are great, but anecdotal evidence is invaluable. I love comparing stories and gaining support from other parents there. Dr. Linda from the Vascular Birthmarks Foundation is also active in that group and available for further resources and guidance.
Remember that no two hemangiomas are the same, treatment recommendations could vary wildly, and you know what’s best for your child. The unknown can be frightening, but I encourage you to look for the positive, and never believe your child to be anything less than perfect.