Hi. My name is Laura – I am 29 years old and I live in North East Scotland and I was born with CMN on my back (about the size of my mum’s hand at birth).
Birth and family life.
When I was born my mum remembers thinking that the doctors could have ‘broken the news a bit gentler’ but she was told “It’s got a very large birthmark on her back, so we are taking her away to check her.” They took me away, and my mum was left worried, not knowing what was going on. She had had a difficult labour with me, and she was given a room by herself.
When Mum went to bath me for the first time, another mum from the ward saw me, screwed up her face and said “Eww! Do you not feel guilty?” – Mum went back to her room and cried. Thankfully, a nurse noticed my mum was upset and had a word with the insensitive lady.
At that point, Mum didn’t know what was wrong with me, but she remembers feeling guilty incase she had done something wrong during pregnancy, wondering whether the fact she had been in a small car accident recently could be to blame? Nobody could give her any explanations to why I was born this way. She couldn’t look up answers in Google back then or join any Facebook groups to try and get more information. But my mum was brave, and she has been my main support throughout my journey with CMN, regardless of our struggles along the way.
My family didn’t treat me any differently but were also not scared to ask about my back when they felt curious, and I wasn’t scared to answer their questions. It felt nice for it not to be completely ignored, but also for it not to be the centre of focus all the time.
Of course, I would get the odd nasty comment from someone (mostly random kids). I once went home from the park crying to my mum because local kids had bullied me saying I had aids and encouraging everyone to stay away from me. For most people though, they were happy at my explanation of it ‘just being my birthmark’ and would just get on with things as normal, which helped.
I was getting more self-conscious about my back the older I got, especially in my teens. Going swimming was particularly difficult for me, as that was when people would really notice it and I could always feel people staring. I also found it hard to progress through swimming lessons because the operations meant I wasn’t able to go to my lessons regularly enough, which knocked my confidence as watched everyone else move up to the next level, while I stayed behind. My granny’s friend measured me and sewed me a special swimming costume that covered my CMN – I loved it. That helped my confidence for swimming greatly.
Hospital stays, surgeries and treatments.
At approximately 6 weeks old, I had my first MRI scan, our understanding at the time was that this was to determine ‘how deep the marks were,’ and to see if it would be possible ‘to cut them out or not.’ However, the MRI didn’t work because I wouldn’t stay still, and a new appointment was made for me not long after, to be put to sleep in order to do the scan successfully.
Before I turned 2 years old, I had had 3 operations to begin removing the marks. My mum remembers thinking I had had more operations than years alive, as to start with, I was having them nearly every 6 months.
From a young age, I had always loved food so my mum would feel bad having to tell me no when I asked for food on the mornings, I was going to be having an operation. I remember her not eating on those mornings too to show me support, and I remember getting to an age where I wanted her to still eat anyway, although I very much appreciated her offer to do that with me, as I did find it difficult. (Adverts for food on tv were particularly tormenting!)
I remember going into Aberdeen Children’s Hospital often over my early years. My favourite part was always when I got into the waiting room where I was allowed to play on two big wooden rocking horses with long hair – of all the toys there, those were the ones I loved most.
The nurses were always lovely to me, and I also liked my doctor, who was a plastic surgeon. He was a lovely man. I would have a yearly check-up appointment with him, where he would look closely at my back and point to different parts of it. It could feel so tickly, and at times it made me kind of laugh. There were often other trainees in the room with us, sometimes four or five. But those appointments were the easy ones for me, as there was no pain involved during the check-ups then, not that I remember anyway. And it was a day off school for me! I was sad whenever retired, as I was with him for a long time. Thankfully, my other doctors were nice too, but he is the one that stands out in my mind the most.
I would be lying if I said I didn’t dread operation day, but I knew my mum would be there with me all the way. I would get ‘magic cream’ on my hand before getting an injection and falling asleep. I don’t remember much about the pain then, the worst part for me was having to stay in the children’s ward afterwards for a few days, without my family. They could visit through the day, which was great, but night times were harder. I remember being consoled by a nurse through the night once when I was just really missing them and wanted to go home. I do have happy memories in there too…there were so many toys there! It wasn’t all bad. One time I had a young girl in a crib type bed at one side of me, and an older boy at the other side. She was so small, and he was really cheeky but in a funny way. He tried to hide a bag of chocolates from the nurses, but they found them later on in the day. It helped cheer me up.
When I got a bit older, maybe around 9 years old, I started getting laser treatment. There was a whiteboard near the waiting room that had “Bathing Trunk Nevus” written on it, and Mum told me that that is what I have. In the waiting room would’ve been the first time I saw other people with similar birthmarks, but some in more visible places.
The process was pretty similar for me: I would have to fast in the morning, we’d go to hospital, and I would get put to sleep. I remember lying on the bed, holding my mum’s hand while the doctors put a mask over my mouth and nose, and I’d quickly start to doze off. She said it smelt like Cromola Foam. As a mother now myself, I think this part was actually probably harder for my mum than me, not that she showed me, as she stayed strong to help me feel brave and that everything would be OK.
I would generally get a patch the size of my palm lasered at a time. When a larger patch was done once, the recovery was much more difficult for me to cope with, so the palm sized patches were done again instead. It would take me about a week of daily dressing changes and cleaning the patch (thank you Mum) before I would feel brave enough to attempt having a shower. I was always scared to have my first shower after the operations and needed gently persuaded. But often I would come out of that first shower feeling amazing and having quite enjoyed the sensation of the water on my back, and of course feeling fresh again. It was always very itchy while healing, itch is still something I experience if I’m honest.
The type of dressings used on my wounds were important. Once, I ran out of the dressings I had been sent away with from a hospital, so we went to a local hospital to get some more. They didn’t have the same type of dressings, meaning we tried using different ones instead. But they stuck to my wound badly and at another time, the wrong type of dressing caused an infection, slowing down the healing process for me.
They tried going deeper with the laser in one of my operations, which unfortunately left me with keloid scarring, large lumpy scars, which were also quite sore at times. I would randomly get sharp pains in them that would make me jolt. I started to get steroids injected into them while I was put asleep, to try to reduce their size. This took years before seeing any results.
I became a mum at a young age, and life just got busy, so the operations stopped. I was told early on that the older I got, the less successful the results would be, because of the way our skin changes as we age. I had originally planned to get laser hair removal on my back too, but I have never got round to it. I have learned to accept my body now. I generally prefer to wear clothes that cover my back, but I don’t panic if someone sees if I have to take my jumper off because I’m too hot. I know that people who are shallow enough to only care about how I look, are not the kind of people I want around me. True friends are not phased by my CMN and only care about making sure I am OK and healthy. Rejection was hard as a kid, but nowadays, if it gets noticed, it’s a unique talking point that not everyone else around here has.
I wish I had known about Caring Matters Now when I was younger. I only just discovered the charity this year, but I am glad that I did. It has been very interesting for me to read other people’s experiences with CMN, and to see all the photos, similarities, and differences between us all. It feels great to know there are actually so many other people just like me! I never really understood that as a kid, and it made me feel different and shyer. I am so glad the charity is available for other people who are beginning their journeys.
Having found the information, I needed and having read personal stories on Caring Matters Now’s website I no longer feel alone. I don’t currently feel the need for any additional support from the charity, but I do want to try and help in some way! I work in a small shop, so I asked for a donations tub, which customers have been generously donating into. Fundraising in this way has also given me an opportunity to raise awareness by having a little chat about it with people who are curious too! As I live in quite a rural area, there are few members nearby, however I do plan on meeting with one soon. I am excited to be able to chat about our experiences, alongside my mum. I look forward to hearing more about her perspective through this opportunity too, and to meeting another young person with CMN, for the first time in my life!