I’m Charlotte, mum to Arlo who was born in February 2024 and has two forms of birthmark, a port wine stain that covers half his face and his arm and a cutis marmorata telangiectatic congenita (CMTC) on his leg.
Since Arlo was born, we have had over 20 hospital appointments, two MRI scans, an EEG, two hospital stays, glaucoma checks, and multiple dermatology appointments. It’s a lot for anyone let alone a small baby. Luckily, he has been cleared so far of the complications that can come with his birthmarks.
CMTC is a particularly rare form of birthmark, and it took us five months to get a diagnosis. We were told on multiple occasions by professionals that it was a range of different things. One doctor told us that Arlo was seriously unwell, others told us most kids have it and some just simply said they had no idea and hadn’t seen it before. This birthmark covers one of his thighs. Sometimes it’s purple and marbled, sometimes it’s red and sometimes it’s simply not there. Its appearance varies dependent on temperature and the colour also becomes much more visible when he is getting unwell. CMTCs can cause a difference in limb sizes as well.
Arlo has both a facial port wine stain birthmark and a CMTC on his leg
When Arlo was born, it was scary to think about how his birthmarks would affect him as he grows up. I worried about him fitting in when he goes to school. Would he get bullied? Will he love himself and the way he looks? Spending all this time worrying almost took part of his newborn stage away from me.
I decided to attend one of Changing Faces’ parent workshops to address some of the concerns I had. Before the workshop, I had been nervous about Arlo’s upcoming treatment, as although he hasn’t had many comments regarding his birthmark so far, once his laser treatment starts, I know it may spark more attention.
I found the techniques on how to deal with staring, by just smiling back rather than engaging in confrontation or turning away, really helpful. I can see how this reaction would be more positive for Arlo as he becomes aware not only of other people but also of how I react in these situations.
All I want is for Arlo to feel confident in himself.
It’s hard being a parent of a child with a visible difference, so it’s important to connect with other families going through the same thing. That’s when you realise that you’re not alone, and it makes things feel so much easier.
Before having Arlo, I didn’t know either of his birthmarks existed, and that’s because you don’t often see people on TV and social media or models with visible differences. I hope in future that there is more representation, and that increasing awareness means there are more opportunities across a variety of platforms for people with visible differences.
Arlo is beautiful, just the way he is, and I hope as society progresses, that we live in a world where he will be accepted for his differences.
All I want is for Arlo to feel confident in himself. I don’t want him to ever feel like he doesn’t fit in or wish that he didn’t have his birthmark. I want him to be proud of it, as part of him.
