Caring Matters Now is a UK charity who work to raise awareness for CMN (Congenital Melanocytic Naevus) . Together with photographer Brock Elbank they have put together an exhibition of photographs of adults and children who live with CMN (14th – 24th March, Oxo Tower, London). I didn’t know about the exhibition until recently and having a child who was born with a very large CMN, I am hugely excited that the public are being told more about this condition. Even better that it is in such a powerful visual way because CMN is beautiful and should be understood and celebrated. Here is just a little part of our story.
Carter Frederick Fox Burridge 24th May 2010, 8.10am
It had been a really long night, we’d come to John Radcliffe at 7pm the night before (a Sunday… never a good day to go in to labour!) when my waters broke. This was my second baby and I was 3 weeks early which wasn’t a surprise as son number 1 had come sneezing in to the world 5 weeks early. Apparently I have an “incompetent cervix” which means my babies can’t stay where they’re supposed to be – frankly whoever thought of that name, seems far more incompetent than me or my cervix.
After a long induced labour and being told to keep my voice down when screaming for an epidural, Carter arrived by emergency cesarean in to a bright, loud, rather emotional theatre to be greeted by his daddy wearing fabulous pink scrubs, a gaggle of doctors and nurses and a mummy who could barely focus let alone move. But what I did see, as he was carried past me by the doctor, was that a huge area of his skin was a deep dark black. Not just shadowy, trick of the light black but blue black, and it seemed to cover an enormous part of him. Jay Jay brought him to me wrapped in a blanket and I asked what was wrong, was he bruised or cold or hurt? “No” he replied, “he has the most amazing birthmark and he’s absolutely beautiful.”
I was in theatre for a long time for reasons beyond my incompetent cervix, it seems I’m just not that great at having babies. I stayed in hospital for a week and started to get to know my little boy who did indeed have a birthmark which covered 60% of his body. It was perfectly and wondrously symmetrical and stretched from his tummy button down to his knees and high up to a point on his back.
That first week will always remain a little bit blurry and hard to recall, I was on a lot of morphine and I was trying to understand why my baby looked the way he did. No one at the hospital seemed to know what it was, no one could give it a name and when a nurse would come in to change his nappy, they’d often gasp when they removed his baby grow which would make me immediately protective and defensive and confused. I was scared and I wanted someone to tell me that there was no reason to be and that my baby was fine and beautiful and unique – which deep down I knew he was.
There was one day when we were still in hospital when Jay Jay and I started talking about names. He was always going to be Carter (his big brother’s called Cash!) but the middle names hadn’t been decided yet. My husband is ever the optimist and his cup is always half full, I’m a little different, I’m not a pessimist and I consider myself incredibly rational but I do suffer with anxiety and so I question everything very deeply. Jay Jay wanted to call him Patch, as a celebration of his birthmark, to send the message to him and to everyone that his skin and his difference should be celebrated and shouted about. I didn’t agree. I wanted to protect him from whatever this was, from the unknown. I wanted to guard him from other people’s questions and stares. I wanted to find out what kind of person he was and how he wanted to manage his skin. I had no idea if he would ever want anyone to know, he might want it to be a secret, he might not want to lift up his t-shirt and show people. How do you know the character of a person when he is barely one week old. A really lovely midwife sat with us in the hospital room while we battled this out, while I cried and Jay Jay tried to listen and to understand why I seemed to want to hide our baby away. In the end we decided not to include Patch in his name and although Carter is in no way embarrassed about his skin, he’s pleased that we made that decision. I’m just sorry that Jay Jay’s positivity lost out to my anxiety – that must have been incredibly hard for him.
We were finally allowed to go home where I hid away with Carter and Cash for quite a few weeks. I said no to any visits by health visitors as I didn’t want their opinions on something they knew nothing about. I hated seeing people’s reactions when they saw his skin as it simply made me angry and more frightened. Our families were great although I know it was hard for everyone, they all had questions and opinions but I didn’t really allow anyone to ask or give them. I needed to understand this first and then I could explain it.
We went to a specialist mole doctor in Oxford when Carter was just a few weeks old and were told that he had never seen anything like this before in his life and couldn’t help. We then went to the Cromwell Hospital to see a fabulous man – who’s name I forget – who had once been at Great Ormond Street Hospital and took one look at Carter and said “he has Congenital Melanocytic Naevus and he’s very beautiful indeed”. He described the condition, which is to do with pigment and melanin, like this, ”imagine a herd of wildebeest looking for water. They all follow the one in front huddled together until the first gets to the water’s edge and stops. As soon as this happens they all fall on top of each other and form a giant pile of wildebeest” This is what happened in the first 12 weeks of my pregnancy when Carter was forming, but with pigment rather than wildebeest. The pigment was being sent all over the body to determine the colour of Carter’s skin but it got to an area and it all backed up forming a deep brown pigmentation across 60% of his body. It started from his spine and stretched out, all the way round until it met his belly button, covering every little patch as it went. It did a pretty good job as it has created the most beautiful shape which wraps around him like a delicious, warm hug. He referred us to the CMN unit at Great Ormond where he would have an MRI when he was just 6 months to see if any of the pigment had reached the brain, sometimes this happens and can cause learning difficulties or similar. He had already looked Carter in the eyes and told us he thought he was absolutely fine so although sedating your baby and sending him in to an MRI tunnel is a hideous thing to have to do, I was hopeful that the results would be good and they were.
Carter is now 8, I can almost talk about him without crying. I don’t cry because I’m sad that he looks the way he does, far from it, I cry because I am sad at the way I have dealt with being given this amazing little boy. I’m crying now, but the difference is that now I know who Carter is and he is the one who makes me strong. Looking back at the first few months I can see that I was most probably suffering from a form of PND, I know simply by the fact that I have no baby photos of Carter splashing about in the bath or playing in his nappy that I was not dealing with any of it very well at all. I didn’t understand it and was scared of what I might find out and so I didn’t ask enough questions. Something I regret more than you can imagine. I remember one time when Carter was just 11 weeks old and the boys were being looked after by a lovely friend of ours who had offered to help out and give me a break. I was tired, more tired than I think I’ve ever been. She loved the boys and took some gorgeous photos while they were playing and there were a few of Carter lying in the sunshine in nothing but his nappy. His beautiful brown tummy and legs there for all to see, as they should be. She posted them on her Facebook page and thought nothing of it, she didn’t see that he was different, she just saw that he was beautiful. I saw them and I went in to crazy mode. I screamed for Jay Jay to call her immediately and tell her to take them down. I didn’t want anyone to see them. These were private photos and I didn’t want anyone seeing Carter like this. Would I have reacted like this if it had been Cash? I don’t think I would and I’m still sad and ashamed that it made me feel like this. That I was so frightened by what people might think or say about my baby. That I had such a screwed up sense of what was acceptable and normal.
CMN is something which effects just 1 in 500,000 people. I had a baby that was one in half a million and that terrified me. One of my closest and dearest friends and godmother to Carter came to meet him for the first time when he was a few months old. I’d written to her and told her about his CMN and told her I was scared of it and that it was making me scared of so many other things.
When she walked through the door she looked at me, hugged me, told me I was too thin and then said “is he going to die?”
“No!” I said
“Ok good, let’s get on with this then”
She then asked me why I was so scared and I said “because a one in half million has happened which means that all kinds of other bad things could happen” and she said “but why are you looking at it as being bad. You’ve been given the most incredible child which means that GOOD things can happen, even when there’s the smallest probability”
I don’t think I ever really truly thought of Carter’s CMN as being something bad that had happened, I was just so frightened by people and society and how he was going to deal with it that it sent me into an irrational spin. How could I ever ever think of him as anything other than amazing beyond words.
Carter is part of the CMN department at Great Ormond Street Hospital, he was first seen by Dr Veronica Kinsler when he was just a few months old and has been monitored at various intervals ever since. He has been photographed and mapped to keep track of the freckles and moles and to keep an eye on any changes there might be within the largest area of his naevus. There is a higher risk of childhood melanoma in children with very large CMN and so it’s important to keep an eye on things. It’s also important that this is done by the trained eye as I can drive myself (and Carter!) crazy looking for anything that might have changed! It’s like trying to read a foreign language I’ve never learnt.
When he was born he had the one giant naevus (which refers to any type of mole we’re born with) which covered his back, bottom, tummy and thighs, he also had a large circular raised patch naevus on his shoulder which he has always referred to as the “King”. He had very few satellites (freckles / moles) when he was born, just one on his face and maybe a couple on his legs and a larger one on his arm – to be honest I can’t remember too clearly when they all started coming. Over the years they have continued to appear all over his body and face, some are tiny little pin pricks and others are larger, more like a mole but not quite as raised. Often it feels like they appear over night and I find myself asking him if he recognises any new ones to which is always looks at me, shrugs his shoulders and says “hmm, who knows mummy”. He loves every single freckle and has his favourites as do I. He has a cluster of three on the back of his calf which look like a paw print, I love that little paw, so does Carter. He also has them on the soles of his feet and on his hands, these are more like freckles, they’re flat and more of a tea stain colour than a brown raised mole. Some of the bigger ones have tufts of golden hair – it looks like gold thread, it really truly does. His primary naevus is covered with a soft gold down, we call it his fur because his middle name is Fox and he likes the idea that he has a coat like a fox. The fur keeps the skin and his body warm as he has very little fat tissue under this main part of the body.
The skin of a CMN is very different from “normal” skin, it has a different texture and is extremely delicate. It can also tear very easily which is something we and Carter have had to understand and cope with over the years. There was a moment, when he was a baby, when I tore his skin with my engagement ring. It’s not a big ring and neither is it very sharp but I caught him in just the wrong place and in just the wrong way and I ripped his skin. It was horrible, he screamed, I screamed, and then very quickly he calmed down and so did I. The skin had peeled back as though it had been burnt and exposed the bright red flesh underneath but there was very little blood. I didn’t know what to do, I was scared to dress it incase I ripped the skin again but also didn’t want to leave it uncovered as it was on his back and would rub against his nappy and any clothing. Carter was crawling at this point and I remember him crawling away from me to where his play-mat was on the floor, he lay down on his tummy, calm as anything and just stayed there. It was almost as if he knew exactly what to do, he just needed to stay calm and keep still and let his skin do the rest. The same thing would happen a few years later when he banged his back on a table whilst playing and went in to a type of shock, I presume from the intense pain of hitting a bone against something hard. He shook a little and looked as if he was screaming but silently, he then took himself in to the other room where the sofa was, lay down on his tummy again and started breathing really deeply.
He lay there like this for about 20 minutes, completely conscious but completely silent and totally calm. I sat at the end of the sofa looking at him and stroking his hair and trying very very hard not to cry. And although there was a huge part of me that wanted to scream and tell anyone listening that this WASN’T FAIR and my child should NEVER hurt like this, I also realised that my boy is golden and strong and bulletproof.
A condition like CMN has to be managed and of course there are things he can’t do like certain contact sports at school, but it’s becoming easier to live with every day. My insistence early on, and until very recently, to keep Carter’s CMN private, to never tell anyone about it unless they asked directly and to never make him feel different in any way, I know now was just my way of protecting my own insecurities. Of course I did it to protect him from cruel words or silly questions or misplaced gawping but actually what I’ve learned, and this is thanks to Carter, is that his difference should be celebrated. He should never be scared or uncomfortable about how he looks, what kind of message is that for me to send my child?! I now welcome the stares and the questions, as long as they’re never directly hurtful. I want people to see every single freckle on my boys face and arms and legs and every little glimpse of brown skin under his shorts or when he lifts his arms and bares his tummy, I want them only to see how astoundingly beautiful he is. Because he is, truly beautiful and this isn’t just because he’s my son, its because he is a child with CMN and beauty is just one little part of this extraordinary syndrome.
In my past life I worked in fashion, so clothes and aesthetics are a pretty big part of my world. If I dare to admit it to myself, I most probably had a pretty skewed view of what beauty was, I was nervous of anything too removed from the pages of the magazines I read and I hated the idea of not fitting in because I didn’t look the part. If only I had a time machine….I could teach my teenage, twenty something, even thirty something self so much now that I understand what really matters when it comes to how a person looks.
It’s not hard to dress beauty and it’s been a joy to dress both my boys, but it is hard to dress a kid who has a back with skin like paper and so needs to be covered up and protected…but without wrapping him in cotton wool. When he plays with his brother they’re like lion cubs, tumbling and rolling around, never staying still, jumping and throwing themselves off sofas and bouncing endlessly on the trampoline. You could look at him and never ever know that there is anything he needs to be careful of and of course as he’s got older and more understanding of his skin, it’s much easier to manage. He knows his limitations and he also doesn’t want to get hurt so he’s cautious without really knowing it. When I couldn’t keep him in a baby-grow any more I started buying Osh Kosh dungarees in bulk from the US. I bought them in every style and size and he was never out of them. They became his own uniform and damn did he look cool! He loved those dungarees and although potty training had its challenges, we got through it and he kept on wearing them right up until age 5 when Osh Kosh stop making overalls for kids….which by the way is MADNESS. From dungarees we progressed to boiler suits – we started with a cotton red vintage one we found at the festival one sunny weekend. Carter’s favourite colour is red and the moment he saw it he wanted it. He put it straight on there and then and when he reached in to the pocket he pulled out a vintage snoopy handkerchief…Carter has slept with his Snoopy teddy (who he calls Dog Dog) since he was one week old and he loves that dog more than anything in this world.
Boiler suits were our saviour, they still are, they have become part of his look and his identity and they have made him stand out in the way he should. He wears his school uniform just like everyone else but he always wears a vest and it is always tucked in tight. For sport he wears extra “skins” under his kit which really just help keep him warm and sometimes he wears a back protector when he’s playing football – he’s on the A team and is the best goalie they’ve ever had. Today as I look at him gleefully throwing himself around the trampoline, his hair is hanging loose down to his shoulders covered only by a black top hat, his camo boiler suit is covered in mud, his snoopy hi-tops lie abandoned in the flower bed and my adidas leather flight jacket, which he stole last week, looks better on him than it ever ever looked on me.
A child should never be labelled. They should not be defined by that thing which makes them different or unique. But it is also important that the thing which makes them different should be celebrated and not hidden away. Carter is different, his skin is different and that’s something we can’t change and more importantly that we don’t want to change. It doesn’t mean his day to day life should be affected by his CMN but it does mean that he has to be aware of this difference and learn to protect himself both physically and psychologically. I have had to learn this too. I have had to find a balance between Carter’s privacy and wellbeing whilst being careful not to feel like I’m hiding him or alienating him from his peers. Of course I don’t want people to look at my boys and be thinking “which one is it who has the birthmark thingy?” but also why shouldn’t they be allowed to think that because he does have a birthmark thingy and if you’re lucky enough to get to know him, he might just show you.
Thank you Carter for who you are and all that you’ve taught me. You’re my hero and I hope you always know that.