My name is Stephanie and I have a beautiful little boy called Roman who is now 4 years old! Roman was born in August 2018, with a rare birthmark on his forehead that we now know as CMN.
When he was born this was a complete shock to us, I had a very healthy pregnancy and a natural birth with no complications. When I first saw him, I thought the midwives had used a tool during birth, as the mark had a dark bluey, purple texture very similar to bruising in my eyes. The midwives and doctors later told us that his mark needed to be looked at by professionals and later referred us to Great Ormond Street Hospital (GOSH), without giving us any real answers.
At this time, after giving birth and many weeks following, I felt a mixture of emotions. On one hand, I was a new mum bursting with love and excitement with my baby boy but at the same time I now feared what his life would be like and how others would react to him. I constantly questioned ‘why me?’ ‘Why us?’ ‘What did I do wrong?’ These emotions spun around in my head far too much. At times, it was lonely, and I felt isolated because there was no one I could relate to and no one who could offer advice or support to me in the way I needed. It didn’t help that I had no idea what it was or why he had it and what the future held for him.
At 8 weeks old we went to GOSH, which was a daunting experience walking into a big children hospital knowing your child was there to check his health. We were finally told that he had CMN. He only has the one and they informed us that it was not harmful, and he was in fact healthy, although he would need to see an eye specialist to identify if his birthmark was internal. I held on to the positive and was super relieved that he was healthy. Particularly as they mentioned his type of birthmark can sometimes be cancerous. They further advised that his birthmark would grow with him at the same size as he grew too, and they advised us that removing the birthmark could have complications. We were also told about a charity that supports parents with children who had this specific birthmark called Caring Matters Now.
Despite hearing this good news, the appointment was quick and short, and I still had so many questions in my mind. The information was a lot to take in and quite overwhelming to digest, let alone all the extra’s we were told about. I wanted to be able to further discuss the option of surgical removal of CMN but found it difficult to find representation of a child of colour who had their birthmark removed for reference. Which for a mother who was unsure, did not provide much reassurance.
In the following weeks and months, again I felt alone and still struggled with my emotions, as I constantly felt that no other mothers were like me. However, I was adjusting to parenthood and developing my own strategies to overcome the internal and external challenges. I desperately wanted to connect with other mums with children who had CMN or connect with any parent from the same ethnic background as me parenting a child with CMN. This did not prove to be an easy task and with the day-to-day balance of my new baby, I drifted away and went back to focusing on raising my child and decided to follow on social media.
However, when Roman was around 8 months old, there was an exhibition in London called ‘How Do You C Me Now?’ I went there with my family, and it was the first place, outside of our home, that I felt we were automatically comfortable. I felt free not to worry about people staring, when we were there it was obvious what Roman had and we didn’t even have to explain. I loved it. It was beautiful and empowering to see so many portraits of other children and adults who also had the same birthmark. Having conversations with other parents who had older children with CMN, really helped build up my confidence about Roman’s and our future.
I realised that over the years I have had a series of fluctuating emotions and I know that every new milestone we hit will come with another set of feelings and challenges. However, I feel that I am at a place of peace with everything and am still learning.
Over the years I have realised that my new baby feelings were due to my own insecurities and perceptions of the world. I now have my own tools to ensure I prioritise self-care and recognise my own feelings when considering differences, but more importantly I am stronger and more confident for Roman.
Fast forward to today, we know Roman’s future is going to be bright. He has the most amazing character, super bubbly, happy and confident. Roman is the child that bounces in a room full of people, without a care in the world, full of energy and put a smile on everyone’s face. He has just started Primary School and he is enjoying it. I worked with the school to inform parents of Roman’s CMN through a newsletter and added information which I felt was unique to Roman too!
I am happy to say he loves his birthmark and calls it either ‘my superpowers’ or ‘my beautiful birthmark’. As parents, we are on this journey together and I am excited for his future because I know he will have a massive impact on others.
It has encouraged me to see that the charity is reaching families to provide support sooner. And despite this not being our experience, I am excited to provide insight and experience to promote equality, diversity, and inclusion as we work together to increase the representation of BAME families who have CMN. As families like mine are represented, I hope that this will support others to make informed decisions about life with CMN.
