How do you normally react when somebody introduces you to a baby? More than likely, your reaction is some variation of, “He’s adorable!” or “She’s so cute!” Now, what if that baby had a large birthmark on his face? Would that fact change your reaction? Would it change what you said out loud, to his mother?
If you’re a good person with any sense of common decency and polite behavior, your answer is a resounding, “Of course not.” Even if you were a little surprised or taken aback, you’d know not to demonstrate those feelings, much less insult the baby and his mother, right? It seems like it should be obvious, yet when people met Ethan, the son of Amanda Masters and twin brother to baby Ahren, kindness seems to have been in short supply. Amanda shares on her blog, City Girl Gone Coastal:
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’.
Yes, people actually called a baby a “monster.” To his parents’ faces. While he was in pain. Some people even accused Amanda of having burned her child, suggesting that calling it a birthmark was her plot to cover up her misdeeds. If the Internet’s taught us anything, it’s that people can be terrible, but this behavior is really beyond the pale.
So why is Amanda sharing these comments, and why are we repeating them here? Because, as she says, a lot of them were made because people are ignorant of an important fact: birthmarks can be dangerous, and as poor little Ethan’s ordeal shows us, they can kill.
What makes something that seems so simple, and that so many people have, so dangerous? Because they can grow, and they can grow inside your body. Ethan’s, a type called subglotic haemangioma, started out looking like a normal birthmark, but over the first month of his young life, it grew, as Amanda explains, “at an alarming rate covering his bottom lip, lower jaw, left and right cheeks, his right ear and in to his ear canal.” Eventually, doctors discovered that it had entered Ethan’s windpipe, and the poor baby was struggling to breathe through a space no large than 1 millimeter wide.
Can you imagine a more terrifying ideal for new parents? Amanda and her husband were also trying to take care of Ethan’s twin brother, Ahren, at the same time, too! Thankfully, the Masters family was able to find treatment at London’s Evalina Children’s Hospital, where Ethan underwent intensive, difficult surgeries that were only able to help somewhat. Eventually, after some months, doctors and the family decided to try an unusual, unexpected treatment: a drug typically used for heart problems and high blood pressure. Amanda says:
Ethan was started on a drug called propranalol, not typically used in the treatment of birthmarks, but which had almost instant results. Over the next few weeks, Ethan went back into surgery several times, until eventually we were told he was well enough to go back to the general ward. This was an amazing moment and one at which we could start to hope he would be coming home with us. Eventually, after a few weeks Ethan was allowed home with a cocktail of drugs and follow up appointments.
Thank goodness! As for how Ethan’s doing now? Well, take a look:
He’s three years old and doing fine! That’s him with his brother Ahren, no birthmark in sight. It’s a happy ending to a scary story, one that reminds us all to trust in our families and in our doctors, and to be kind to one another. You never know what burdens the strangers you meet are carrying. As Amanda shares,
I like to think that maybe we went through such a crappy experience so that we can maybe help others.
Ethan was the 2nd person to undergo this new treatment, which is now widely used to treat birthmarks such as this, thanks to him, maybe other parents and children don’t have to have such a crap time.
Let’s learn. Let’s remember. Let’s be kind.