Good Morning and Happy Vascular Birthmark Awareness Month! It’s that time of year where I get to join the wave of mass conversation with our own story about Charlie’s journey with an infantile hemangioma. (If you’ve been here from the stone ages, you probably know all of this.) Since there are so many types of vascular birthmarks and they are often misunderstood, I want to tell you more about Charlie’s.
Note: if you are here because you are like I was almost five years ago: desperately googling for answers- I encourage you to join the Hemangioma Parents Facebook group for community and information.
Infantile hemangiomas are not present at birth and rapidly proliferate (grow) for up to one year. There was major change the first few weeks of her life. They are commonly known as a “strawberry”. They have been shown to respond well to Propranolol (a beta-blocker) which Charlie started taking at 6 weeks old.
Because of the size and location of her hemangioma, she also required an inpatient hospital stay for an MRI, cardiac workup, and other diagnostics to rule out other associated disease like Sturges-Weber Syndrome. She also had an Ophthalmology consult to rule out glaucoma. This was a terrifying time for me. I had a newborn and a million unanswered questions. The diseases and major complications were ruled out during a scary couple days at CHOA. At that point we knew we were dealing with a facial anomaly, but nothing that would cause pain or threaten her life. We were so grateful for that. Every hemangioma is unique and every treatment plan is very different. Charlie took propranolol for several months and her hemangioma has continued to involute on its own. At almost five years old, it’s mostly faded.
In early 2016 I wrote an open letter about my feelings surrounding her face and more strongly, my feelings about people who had opinions about it. That message spread worldwide and started a conversation of choosing not to hide our “anomalies” but celebrate our individuality. There was plenty of backlash as usual, but way more good than bad. My only hope was for people to be happy for her, not pity her.⠀
So, how can we as parents create more awareness about not only vascular birthmarks, but ANY physical difference?
As with a lot of things I speak about, we can stop hiding for fear of human ignorance. Don’t stay home for fear of stares and whispers. Take the beautiful photos of your beautiful child, birthmark and all. Make sure they know they are beautiful and perfect the way they are and NEVER use language/behavior around them to make them wonder if/why they should feel less than. Confidently and politely educate when people ask questions. Never fault another child (especially) for being inquisitive and always take the opportunity to teach.⠀
Every year on the first day of school I gift/plan to gift Charlie’s class a copy of the book Sam’s Birthmark. It’s an easy way to address the obvious and educate the kids. I also designed a shirt to raise awareness and normalize facial anomalies. A portion of the proceeds will benefit Vascular Birthmark Foundation. My hope is that ANY person with a noticeable “difference” will wear this shirt proudly to start conversations and change the definition of normal. Infantile hemangiomas are just one condition on a long list of diagnoses that affect the way a person looks, sounds or acts. We can always work to be more educated and more compassionate.
LauraMay 27, 2020 at 12:19 am
I just love this!!! We live in such a shallow world, so obsessed with an impossible beauty standard. It is critical to embrace and celebrate our differences, not alienate and hide them.