My daughter Vienna is full of happiness, all the time. As with any two-year-old, she’s always running around, dancing and being mischievous.
Vienna was born with a large birthmark on her forehead, known as a Congenital Melanocytic Naevus, (CMN). They’re incredibly rare – it’s estimated that one in 20 thousand newborns have them.
When Vienna was born, as she got passed onto my chest, I could see by the look in my partner’s eyes that there was something unexpected about her appearance. I was over the moon at giving birth and seeing her for the first time. But I felt scared straight away as I saw her CMN. I didn’t know what it was and I didn’t know how it was going to affect her health. There were so many things going around in my head – it burst our baby bubble and spoilt that newborn moment that every parent dreams of having with their child. For the weeks that followed as we searched for answers, all we thought about was: is she going to be ok?
The impact that sharing our story had on other people still seems unbelievable.
Although we felt more positive when we were finally told the name of Vienna’s birthmark, it was quite a shock googling it and seeing cancer-related topics come up. Waiting three weeks to get referred into more specialist hands caused constant anxiety. I had so many questions that were left unanswered.
When Vienna was around four weeks old, we started to think about sharing her story. We were still looking into what health-related concerns CMNs might have, with unanswered questions and without knowing a single person with a birthmark like hers. It was terrifying and I wanted other parents like us to not feel as alone as we did. We started to blog Vienna’s journey on social media.
Vienna’s family decided to share their story on social media so that other parents might feel less alone.
After putting a picture of Vienna on my Facebook page, I was overwhelmed with the response I got. Hundreds of messages flooded in, with parents sharing their experiences of having a child with a visible difference. With the overwhelmingly positive response we received from our Facebook post, we knew that setting up our Instagram page was going to be important. We wanted to spread the message that it’s ok to feel anxious and scared – rare conditions can feel overwhelming and it’s hard having so many questions unanswered.
The impact that sharing our story had on other people still seems unbelievable. Not only did we feel like we had a community rallying around us, we were all there to support each other.
After our appointment with a specialist, we decided we’d like to go private to get the CMN removed. It was a difficult decision based on a large combination of factors. As parents, we tried our best to look into Vienna’s future. Our decision really did boil down to understanding how Vienna’s CMN would impact her life. First, there were the health risks: Larger CMN, like Vienna’s, tend to grow with the body and are associated with a higher lifetime risk of developing melanoma – a serious type of skin cancer that can spread to other areas of the body. If we’d left it, Vienna would have had yearly checkups in hospital. What if it became cancerous when she was six or seven and we had to get it removed then? Not only would it really disturb her school time, it would’ve felt very scary to a little girl who understood more about what was going on.
As most parents who have a child with a visible difference would know, we also felt worried about her school life. What if Vienna wasn’t accepted for looking different or bullied because of her birthmark? And how about later in life, would she thrive in a world where impossible beauty standards and online trolling and cruelty exists? At the time, I didn’t know that Changing Faces exists to support anyone with the emotional impact that a visible difference can have.
There are also many benefits to having it removed at an early age. Firstly, Vienna won’t remember the surgery she had. Her recovery time didn’t impede on school life or other big life moments and her skin as a baby was more supple and easier to perform this type of surgery on.
We set up a GoFundMe page to try to cover some of the costs. We were completely overwhelmed with the response we got. Thousands of strangers were donating money to support us as a family. I’ll never know how to thank each and every person for helping us to afford the operations but I keep everyone updated regularly with pictures and news on how Vienna is getting on.
Now Vienna has a different type of visible difference, but Celine still feels closely connected to the birthmark community.
Now, Vienna has a scar – a different type of visible difference to represent the birthmark that was once there. It’s strange that we’ve received different reactions towards her scar than we did with her birthmark. When Vienna had a birthmark, we got lots of smiles and we would smile back. I always knew there would be curious glances. When you’re out and about in a daydream and something catches your eye, it’s normal to take a second glance. It’s what happens next that’s important to the visible difference community: I like it when people smile at us. It’s a nice gesture. In the beginning, it was like they were saying “she’s beautiful, don’t worry.”
Now that Vienna has a scar, we’ve had more comments and interactions with people. People seem to be curious about how she acquired a scar. I like to use this opportunity to educate people on what CMNs are and take time to share pictures and explain. It always feels bizarre that most people have never even heard of a CMN before, when it’s become such a huge part of our life.
We’ve had great support from the CMN charity: Caring Matters Now. They do amazing things and it’s inspired me to dream about setting up my own CMN charity in future. I recognise how privileged we were as a family to raise money and be given a choice about Vienna’s CMN. I’d like other families to feel the same. This charity would support parents with the decisions they make around getting their child’s birthmark removed. Or even supporting an adult, should they wish it. As a charity we would get to know everyone’s story and as a community fundraise for it together, spreading more awareness around CMNs as we go.
