Rare Disease Day - 28th February 2015

My Daughter Sophie

By Ginny

Sophie and me

Sophie and me

Sometimes when I read the CMN newsletter I am left feeling heartbroken at what some families have had to endure with their children who have been born with CMN. Part of me is very glad I was so ignorant of this condition when my daughter was born because for us it has been a much easier experience and I hope the following will help others to feel positive about bringing up a child with CMN.

Sophie was born in June 2000 with a large hairy CMN covering the left side of her face and skull and with several satellites elsewhere on her body and legs. At the time it appeared that not much was known about CMN and we were referred to several medical people before we ended up at Frenchay Hospital in Bristol when Sophie was just a few weeks old. The sole topic of the consultation was how the mark should be removed and we listened with horror to a description of curettage before it was decided that the best course of action would be for Sophie to undergo laser treatment. So, at nine weeks old we left our daughter lying on a sheet of bubble wrap being prepared for surgery and waited. After what seemed like hours we were asked to go to the recovery room. As we approached we could hear Sophie screaming her disapproval about the whole procedure and we were so focussed on calming her and ourselves that we didn’t really take in what she had gone through. She and I stayed in the high dependency unit for 24 hours as Sophie was on a morphine drip and, after four days we were allowed to go home.

Her skin was raw and required frequent dressing changes. I wasn’t able to do this alone so the practice nurse at my local surgery did it for me. I don’t know who was more shaken by the experience – her or me! However, when Sophie had healed we were able to see that the mark had lightened considerably and were persuaded to go through another couple of laser treatments. Each time we had battles with ourselves as to whether we should be putting Sophie through what we considered to be cosmetic procedures.

When Sophie was 4 we insisted that there should be no more laser treatments. It was never going to get rid of the coarse hair that was part of her CMN and, for a girl; we thought that would be more distressing than pigment or scars. The plastic surgeons turned to excision and suture and two skin grafts and Sophie went through 12 operations in as many years. I became quite adept at dressing changes and would pop Sophie on to the kitchen table to change the dressings after her skin grafts! She always took the procedures in her stride and the day after one operation she was rehearsing for the school play! She has never made a fuss about what the doctors and nurses put her through (although she gets very anxious about ‘that cold cream’ on the back of her hand)! She is now waiting for a date for the last operation and is happy with her appearance and confident about showing her scars.

The staff at Frenchay made the hospital visits as easy as they could and going ‘for a sleepover at Frenchay’ has been an annual treat!

It seems strange now that we knew so little about CMN but for us it was a case of ‘ignorance is bliss’, as we never realised that a CMN could be anything more than a cosmetic problem. Sophie never had an MRI and we were never anxious about how she would develop because it never occurred to us that there might be a problem.

As it has turned out she is a bright and confident girl. She has thrived at sport and is playing rugby at national level. She enjoys school and is fully involved in all aspects of school life. She has a beautiful face and a kind personality. She is completely relaxed about her face and has no fears about being photographed with her hair pulled back from her face. She has never been bullied and answers all questions about her condition in a calm and confident way. She has never seen herself as being unfortunate and has always been positive about her treatments. She says that being instantly recognisable is an advantage as rugby selectors never forget her! We are extremely proud of her.

Leave a Reply

Your email address will not be published. Required fields are marked *