I’ve been documenting Victoria’s hemangioma journey and her hemangioma treatment since she was 3 months old. When we first found out that Victoria had a hemangioma, we weren’t sure what to do or how to proceed. To be very honest with you, I was scared out of my mind. I wasn’t sure what we were going to do for her, but I knew I would do anything and everything for her.
Hemangioma Treatment – 6 Year Update
If you’re not familiar with hemangiomas, they are a type of benign (non-cancerous) tumors in infants. This abnormal cluster of small blood vessels appears on or under the skin, typically within one to three weeks after birth. In our case with Victoria we were able to notice a pink patch on head the size of a penny when she was first born. It progressed from there. Since we weren’t sure what it was at that point we didn’t have a plan in place for her hemangioma treatment.
This is what a hemangioma looks like underneath the skin. They are seen more frequently among preterm infants. They can appear on the face, scalp, chest, or back. Most hemangiomas disappear on their own. In rare cases, a hemangioma can interfere with vision or cause other symptoms, and can be treated with drugs or laser surgery. Victoria’s was right on her forehead, so it wasn’t interfering with her sight or her hearing.
I’ve made it my mission since Victoria’s hemangioma to share our story. I wanted everyone to see what we did for her in terms of her hemangioma treatment. I was so scared when I first start learning about them because there wasn’t out there that wasn’t scary! I remember reading story after story and they just made me so nervous. I made a pact with myself that I would share everything I could about Victoria’s and show videos along our journey.
This is our latest video, our 15th one (!) that we just shot together. As Victoria has gotten older I’ve been using her birthday as a solid marker to do the updating. I have enjoyed being able to do them with her now, too. She knows she has one and also hasn’t known a time without knowing about it! It’s something that I appreciate and she even tells people on her own that she has one, too!
When it comes down to her hemangioma treatment – I’ve also shared our story. There are (thankfully now) different options for parents out there now, too. You don’t have to worry about not being able to find a treatment that works for you and your family. We opted to have Victoria seen by a doctor at Boston Children’s Hospital. We love it there because they are one of the top hospitals in the country for hemangiomas and hemangioma treatment.
I’ve share this story before, but when she was a baby I went to a local doctor here at Hasbro. I had been told he was a great doc and was actually relieved to get an appointment with him. When his nurse was came into the room to meet us, she looked at Victoria and said, “You’re so pretty and when we’re done with you, you’re going to be gorgeous!” That one statement, as innocent as it was really hurt me.
She was gorgeous, even with the hemangioma on her head. It really bothered me as her mother.
The doctor ended up coming in and wanted to put her on propranolol. After doing some research on it and knowing that Victoria’s hemangioma was truly not effecting anything internally on her, we opted not to go ahead with the medication. I was too nervous to do it and at that time there just weren’t enough people I could reach out to and talk to about the medicine and their child’s journey.
When went to Boston Children’s Hospital after that and met Dr. Greene. He was like a superhero to me! He looked at Victoria and recommended we do nothing but monitor it. It was like being given a gift. While we were under his care Victoria’s hemangioma ulcerated. This is common, but it’s also very scary. The little hats I was putting on her head were causing too much friction on her hemangioma, but it was the dead of winter – so she needed a hat!
We ended up having to wrap her head with gauze and use rounds of cream on her head for 8 weeks. It was so sad to see her little head wrapped in gauze for 2 months. She was so tiny and it was sad to see. Everywhere we went everyone asked what had happened to her. When I started to explain I could tell people were thinking to themselves, “What is she talking about?”
As most people will tell you who know about hemangiomas, they grow like crazy the first 12 months and then they start to regress. I didn’t believe ANYONE when they told me that, but it’s true. Victoria’s hemangioma started to regress, even without the hemangioma treatment of meds. Since we had to wait and watch for our treatment route it definitely took longer, but it did start to shrink.
I hope my video helps a mom and/or dad out there. It’s truly something that means a lot to me to share our story. I love being able to give insight and what we did. I’ve done so much research about hemangiomas, so it’s something that I feel I know inside and out now.