My Victoria was born with a hemangioma on the left front side of her head. In those first couple of days, I just thought it was a little red bruise. I couldn’t figure out what it was exactly. I remember the pediatrician at our hospital telling me that she was pretty certain it was a hemangioma. I immediately looked it up online and I immediately got nervous. As one knows, google is not a mom’s friend when she’s looking for comforting answers. I was terrified it was something that would be harmful to her. I just didn’t know about hemangiomas and their life cycle. Through the first couple of months I had a few moms reach out to me with their own personal stories… each one told me in time, it would go down. But you need to understand… at this time in Victoria’s life, her’s was just getting darker red and bigger. It scared me from my head to my toes. I then finally reached out to a specialist at Boston Children’s Hospital and for the first time… I actually began to feel some comfort. My biggest fears? Did she have them growing internally. Did she feel her hemangioma? Was it putting pressure on her brain? All these things crossed my mind, but I was terrified to actually speak them to just “anyone.” When I found the right doctor, I was like a waterfall of questions. And he told me the best advice of all, “Stay off of the internet, if you have a question – call my office.”
I have been journaling our story on my blog since Victoria was born. At first, it was an outlet for me to kind of have a check point. Something I could go back to each month to see if there had been any changes. Now it’s become a place for me to share and hopefully help and educate other moms and dads going through the same thing.
As you can tell, her hemangioma has changed throughout the 23 months, but it hasn’t been without nerves and fears. As you can tell from the 1st photo, we went through a bout of ulcers in Dec 2013 with her. It killed me because they would bleed and I was frozen with fear, but had to stay strong for her and my family. The toughest part for me was the questions and the comments in that first year. I only saw beauty when I saw my daughter and many people (too many to count) didn’t see that… they saw this “UGH! What is that!?” And that. That killed me to the core. It was a lesson for me and my family to see that people don’t have filters and can sometimes say – without maybe meaning to – hurtful things. My girl… she’s my life.
I did a video with my Victoria yesterday talking about her hemangioma. The funny thing is… now she KNOWS she has one! It’s actually pretty funny, if someone says the word, she points to her head.
I want to be here for any moms and dads who have any questions. We opted not to do any of the medication with Victoria for personal reasons. We opted for the wait and see approach. I know there are many different paths to go, but if you’re looking for any answers or have any questions for me, please reach out.