My name is Stephanie and I have a four-year-old son called Roman. Roman was born with a Congenital Melanocytic Nevi (CMN) on his forehead, which is a type of birthmark.
I had a completely normal pregnancy with no complications, so I was shocked when I first saw my son – I thought the midwives had bruised him with a tool during his birth. They then told us that his mark needed to be assessed by specialists and we were referred to Great Ormond Street Hospital (GOSH) with very few answers to our questions. As you can imagine, whilst waiting to see the team at GOSH we had lots of questions, with no answers, it was a really worrying time.
A mixture of emotions swirled in me. As a new mum, I was overwhelmed with love for my baby, but I was also worried about what people’s reactions to Roman would be. Questions like “why me?” and “what did I do wrong?” kept popping into my mind. It was a lonely experience, because there was no one I could relate to or who could provide the support that I really needed. Not knowing what his mark was or the medical implications of it didn’t help.
I’m passionate about raising awareness of CMN and increasing representation of ethnic minorities with visible difference – to help all families feel represented and supported.
We went to GOSH when Roman was eight weeks old. It was daunting going to such a big children’s hospital knowing my son was now a patient. Finally, we were told he had CMN and that it wasn’t harmful for him. Whilst he would need to see an eye specialist to identify if his birthmark was internal, he was given the all clear. This was a huge relief.
We found out that his birthmark would grow with him and that removing it may cause complications. I wanted to discuss the option of surgical removal in more detail, but the appointment was quick and many of my questions remained unanswered. Starting my own research, it was difficult to find representation of a child of colour who’d had their birthmark removed, so I felt a little left in the dark.
Adjusting to parenthood is challenging as it is, but feeling like there was no one else out there who understood the worries I was experiencing made it even harder. I desperately wanted to connect with other parents with children who had CMN, especially those with the same ethnic background, but this proved very difficult. In the end, I decided to follow a few individuals on social media instead, as I just couldn’t find people to connect with in person. Additionally, there was no service I was aware of at the time that could point me in the right direction.
However, when Roman was around eight months old, there was an exhibition called “How Do You C Me Now?” in London, held by Caring Matters Now – a charity that specifically supports people with CMN. It was amazing for me to see this representation on TV, billboards and the news. So, I went along with my family, and for the first time outside of my home, I felt comfortable. I didn’t have to explain Roman’s mark and I didn’t have to worry about anyone staring – it was so freeing. There were portraits of other children and adults with CMN all around the exhibition and it was incredibly empowering to see them. I was able to have conversations with other parents who understood my situation, which really helped to boost my confidence. This was one of the best experiences of acceptance for my family that I’ve had and one I’ll never forget.
I know Roman’s journey won’t be a linear one. Every new milestone we hit will trigger a variety of emotions, but I’m at a place now where I am at peace with that.
I’m constantly learning more about CMN and visible differences more generally, and I now realise that the feelings I had when Roman was born were down to my own insecurities and perceptions of the world. I’ve developed self-care tools to cope with my feelings and have become stronger as a result. Since starting Roman’s Instagram page, I have been amazed by the people I have connected with and the conversations I’ve had with other parents too. It’s something I wish I’d started earlier, but I’m grateful I’ve got it now, particularly for Roman.
Roman has the most amazing character. He’s bubbly, happy and confident, lighting up any room he’s in. He’s also settled in well to primary school, which was one of my early worries when he was a baby. When he started, I worked with the school to inform parents about Roman’s CMN through a newsletter and made sure I added information that was unique to him too.
Roman calls his visible difference his “superpower” and his “beautiful birthmark” – it’s amazing to see his positivity towards it. I’m so excited to see what his future holds, because I know he will make an impact.
I hope that sharing my story will help other parents reach out for support sooner, whether that be from Changing Faces or Caring Matters Now.
“I want Roman to understand about his birthmark and to know that while it makes him unique, he is not alone.”
Going forward, I feel that better training is needed for healthcare professionals so they can provide guidance for families who don’t know how to access support. Health care professionals should be able to signpost to other organisations, particularly to help people manage their wellbeing and mental health, which is so often impacted by having a visible difference, or a child with a visible difference.
Additionally and more importantly, there needs to be an increase in representation of Black, Asian and other minority families who have experiences of CMN and other visible differences. Greater representation will empower families to make more informed decisions and will allow healthcare professionals to be more aware of how scars, marks or pigments look on different skin colours. From my experience this has been seriously lacking, and needs to be addressed.
Representation is hugely important to me, because as a black person, I feel that we already stand out and have historically been misrepresented. To feel accepted, understood and included would be an amazing shift, whether it’s based on ethnicity or visible differences. I want Roman to understand about his birthmark and to know he is not the only person in the world with it. While it makes him unique, which is beautiful, I don’t want him to feel alone. However, I know representation is an ongoing effort. Education will be vital to achieving this, including more publicity of the topic. Others need to see people with visible differences in campaigns, adverts, fashion shoots, the news, and the media more widely. Positive visibility is key as that is how visible differences will continue to become more normalised.
Changing Faces’ I Am Not Your Villain campaign shows that more work needs to be done to improve this representation of visible differences. Its infuriating to know that people with visible differences could be perceived negatively just based on how they look. This hits a nerve for me because as a mother, I wouldn’t like for Roman to encounter this sort of discrimination. However, it means parents like me have to work harder to build our child’s confidence and encourage a positive mindset. I want Roman to have the tools to be able to deal with negativity in the best way he knows how peacefully. I will continue to educate myself and others around me, so my son continues to have positive experiences as he grows up.
