To most people a birthmark is nothing of much importance, they either have one or know someone who does, but in the grand scheme of things birthmarks are just ‘there’.
To our family birthmarks are so much more, we nearly lost Ethan as a result of his haemangioma birthmark.
What we and apparently many others, even in the medical field, were unaware of was that birthmarks can grow internally as well as externally.
By 3 months old Ethan's birthmark was growing at an alarming rate covering his bottom lip, lower jaw, left and right cheeks, his right ear and in to his ear canal.
It took my persistence and the amazing staff at the Evalina hospital to determine that Ethan's birthmark was growing inside his windpipe. Imagine trying to breathe through a 1mm wide opening, that is the size to which Ethan's windpipe was reduced to as a result of the birthmark.
It was difficult enough to handle the nasty comments we received from strangers regarding Ethan's appearance, a few of the most notable comments were
‘What did you do to him?’
‘ARRRGH HE’S A MONSTER’ this was followed by the person running away from him
‘You do know you can get him fixed?’
There were so many, each one worse than the other, and whilst I’m sure most were well intended it was rude, heart-breaking and just plain ol’ obnoxious.
Worse though were the people who were ignorant to the fact that Ethan's birthmark was actually killing him. Despite him being in PICU, sedated, undergoing numerous surgeries, and having machines breathe for him, people would still stay ‘It’s just a birthmark’.
They are never ‘just a birthmark’. They are part and parcel of the individual. Some are more pronounced than others, some cause serious issues whilst others don’t. But each one is as much a part of the individual as their limbs or hair. They aren’t something to be mocked and ridiculed, they aren’t to be poked or prodded.
May is Vascular Birthmark Awareness, each year people make an effort to raise awareness for vascular birthmarks, here you can find out a little more about Ethan's experience, which although not typical it is worth knowing that not all birthmarks are visible.