I am an older mother; Eva was born when Colin and I were in our forties. She was the little girl we had waited for, for so long!
I went into hospital on the eve of my birthday. The labour was long but little did I know that this procedure would go on through the night and into my own birthday!… and so Eva and I share the same birth date.
Colin was with me throughout and knew as she was being born that she had marks on her skin but he didn’t say anything. We enjoyed the moments immediately after birth thoroughly. Eva was laid on my chest and remained there for what seemed like ages. I didn’t see any marks and no one said anything. I just smiled and enjoyed this special time. This is very much the way things have been ever since!
The first I knew of marks on Eva’s skin was when a senior midwife came in and said that she “must point out these marks.” The way it was said, I thought that this was some everyday occurrence. Within a short time, I realised that this was something different and a registrar informed Colin and I that the condition was potentially cancerous. I didn’t quite take things in; I was overwhelmed and confused as it was so soon after giving birth. I cried at this point. Looking back, my situation was the same as others I’ve heard of, the information was conveyed clumsily, the doctor was ill informed and there were more questions than answers.
The three of us were taken up to a private room where we settled into the usual early family moments, cooing at our baby and phoning relatives. I was on a high but with very nagging questions in the back of my mind.
Some time later, a consultant came in and was able to tell us that the registrar’s earlier prognosis was completely wrong, that the condition was called CMN and that it was not life threatening. We were greatly relieved, tired and ready to go home!
The consultant made an appointment with the dermatology department at our local hospital for the following week. In the meantime, Colin was able to go on the internet to find out more, something I didn’t feel ready to do. I could only take on board very little information at a time and needed time to think through each new piece before I could handle the next. I was therefore glad to take care of Eva’s everyday needs, visits from family and friends etc. and keep my mind occupied on other matters. Colin was the one who found out about Dr Atherton at Great Ormond Street Hospital. Finding such a reputable link was a huge step forward and a great relief. Our local dermatology appointment was a complete disaster as the consultant had not made any effort to find out about the condition. We were told to undress then dress Eva and nothing constructive or supportive was said as two colleagues fleetingly looked at her. It was very upsetting. Colin, who by now was angry and frustrated, asked if we could be referred to Dr Atherton and fortunately we were. Six weeks’ later, we were in Dr Atherton’s surgery, the best result we could have had!
During those early days and weeks, we realised that we had a special little girl. She was feisty, strong, fun and a first class patient. Our trips to GOSH became a bit of an adventure.
I also realised that people didn’t give more than a fleeting look at Eva, if any at all. Inside, I had been wondering how her everyday life might be affected and felt tentative and nervous in those early days. But I soon came to realise that I had every reason to be confident and relaxed, proud of my child and each step of her journey.
Eva has a bathing trunk naevus and satellites over her limbs. One or two satellites were large and prominent; she also had a mole in the centre of her forehead. Dr Atherton recommended that some work could be done in her early years to remove these smaller marks and Eva had 3 successful operations and we still believe that this was the right thing for her.
Wanting to find out all the options, we had a private consultation with someone who could work on the large mark but we decided that the risks were too high and that we would instead wait for developments which might bring about a safer and more satisfactory result for Eva should she want it in later years.
Eva had an MRI scan when she turned two which was clear. She was developing normally and we established a routine of 6 monthly visits to GOSH for checks and to be part of the research programme.
We have enjoyed the support of the network and have been very excited by the work of Dr Veronica Kinsler. Her dedication and support have been invaluable and we are eager to see what outcomes await all of us.
So, what of our everyday lives? Eva is now 7 and a half, an age when she is becoming more aware of her marks. She is still fun and feisty and very beautiful! She has also developed a large amount of common sense and has taken strategies for managing her situation with great poise and strength. She joined a new swimming class last weekend and her marks were on her mind. I noticed a couple of children look as Eva took off her robe and entered the water. However, it was only a momentary glance. Afterwards, Eva said that she noticed them look and that she turned away and got on with things. They didn’t look again. Eva was in and out of the water and I didn’t notice anyone look. Her confidence and the fact that she behaved like everyone else meant that she was just the same. She LOVED her lesson and Colin and I are very proud of how she is managing this stage of her life.
I don’t know what the future will bring. Eva may be given the opportunity to have her birthmarks all removed and we will work hard to give her that choice. In the meantime, Colin and I don’t look ahead to potential worrying times too much, why worry about something which may never happen? As parents, we know that there will always be things to deal with at each stage, everyday things that other parents and children have to deal with. Each one will be dealt with at the time and a satisfactory way ahead found. Usually, it is our sensible daughter who comes up with the solution
