Hello, my name is Lynne, I have a son called Rhys, and he is 10yrs old and has CMN. Until 6 weeks ago we had never met anyone else with this condition.
We met Jodi Unsworth in Liverpool, and many other lovely people who had children with this condition; we also met the children, which was amazing for Rhys and myself, as Rhys has never met another person like him.
Rhys’s father Andrew found this meeting very inspiring, and we are all so glad we attended.
After we returned home, I was asked to write a story about Rhys, and this is my story!
Rhys was born with CMN, which at the time we knew nothing about, and it absolutely scared us to death. We thought he would never grow up and have a normal life, and at the time we didn’t even know what was going to happen to him medically or how this condition would affect him.
Where I live, the hospital didn’t have a clue what it was, and at the time I just wanted answers. My experience in hospital was not at all good, I felt so alone and frightened. Having since met other parents in Liverpool, I realised we were all treated the same, which in this day and age is quite disgusting. There was no support at all; we were all left to just accept and to get on with it, which some of us found very hard especially myself.
We were sent to London, to meet Dr Atherton and only then did we learn what his condition was. We realised that he was going to be ok, as we had all different thoughts about what Dr Atherton was going to tell us. We found out so much in just one visit, the visit brought some answers to us, which we both so needed at that time.
We then met with our local plastic surgeon, who at first just didn’t know quite what to do with Rhys, as he had never seen such a large CMN before. Rhys’s largest mole covers from the top of his head down to the middle of his back, and also covering his shoulders. Our local plastic surgeon said it was to big to treat. However, when we met Dr Atherton he had already suggested to me about tissue expansion, which I passed onto our local plastic surgeon, he told me he would give it a go, and as the hospital was much closer to me than London, I thought it would be much better for us all if we had the treatment done locally.
Rhys had his first tissue expander put in when he was about six months old. It was put in the lower part of his back, with the port, which is used to fill the expander under his arm. Things seemed to be ok, until it came to filling the expander.
I had to take Rhys every week for them to fill the expander. As Rhys was so young, and this was something that hadn’t been done before, the nurses were very nervous, and very unknowing about this procedure. Things did go wrong with the treatment, but I don’t blame the nurses as they were lovely to me and Rhys.
The tissue expander was punctured and had to be removed. To puncture the expander is so easy, as you only have to be slightly out of the port and it would puncture the expander, or even just have a shaky hand, and when your nervous this cant be helped! Every time this happened it meant Rhys would go through two operations, one to take it out, then and another operation to put another tissue expander back in.
Rhys had at least 7 expanders, and only 2 were successful. One of the expanders was filled by the plastic surgeon with a large syringe, which seemed to make such a difference. He didn’t have to fuss around changing the small 10ml syringes. I think the punctures that did occur was because of the small syringes that were used in the past.
The other tissue expander was actually filled on the operating table, as Rhys got to a stage were he wouldn’t tolerate it no more. I am convinced that if the plastic surgeon had filled them himself, things would have been so different.
The operations lasted over two years, and I would be a liar to say it wasn’t hard, it was the hardest thing I have ever done in my life.
Things were not made easy as Rhys developed extremely severe eczema, all over his body, his face being the worst. The medical staff thought it was because of stress. This was awful for Rhys as he was ‘wet wrapped’ twice a day, and hospitalised a lot because of his eczema. It was very distressing for Rhys and me, in fact it was a nightmare I will never forget.
Now Rhys is nearly 11yrs old, we have got his eczema under control, but it still affects him, however it is a part of life now, he has had no more tissue expanders, as I think me nor Rhys could take no more, mentally or physically, and when people see his back they think it is great, but for what Rhys and myself went through and of course it affects all the family in ways, as I have a daughter as well, who I didn’t seem to have any time for, so if I am asked was it worth it? In my experience I would say no, as I think in the beginning I just wanted to get rid of it all no matter what, I think it was just down to the fact I didn’t accept his condition and would have done anything just for him not to have it.
As Rhys has grown, I now realise this is part of him, and it is what makes him, and his vibrant personality. Rhys has never had a problem with it, he accepts his condition, and that he is a little different, but that is what makes him so special to us all, and who meets him.
Rhys is now in his last year in junior school, he knows that sun cream and his hat are the most important things, but other wise he lives a naughty and quite normal life, and fair play to him, all that he has been through doesn’t␣t stop him doing anything, he is so confident in himself I hope he has always got this enthusiasm to live his life with the courage and pure determination he has shown so far, we are so proud of him.