Our beautiful second daughter Emme, was born on the 9th July in Antrim Area Hospital. As with everything Emme does, she arrived on her own terms, 11 days after her due date. I had a fairly quick labour with Emme, after what was a normal pregnancy. I didn’t notice Emme’s birthmark straight away, I remember thinking how much she looked like her older sister when she was born. After, what was probably only a few minutes the midwife pointed out to us that she had a mark on her face, she said at this point that she believed it to be a birthmark and nothing to worry about. In that moment I didn’t really think too much about it, just that our baby was here and well.
We had a good experience at the hospital, and we were quickly provided with a private side room to allow us some privacy. Unlike some other stories I have read, we were provided with answers to what the mark was on Emme’s face very quickly. Emme was born on a Tuesday, and this happened to be the day for the dermatologist’s outpatient clinic. We meet Dr Devereux that same day, she advised us that Emme’s mark on her face was a condition called CMN. She provided us with some information on it and had a short discussion on the options available to Emme. She advised, she would refer us to a laser specialist, and also to a plastic surgeon to discuss the options available to Emme in the future. Dr Devereux was very reassuring and put us at ease, she discussed the possibility of needing an MRI scan, but felt that as Emme only had the one CMN, this would be something that could wait and would be depend on her development if it was required. On that same day Emme was born we also visited an eye specialist in the hospital, as Emme’s birthmark was close to her eye they wanted to confirm her sight was affected, thankfully her eyesight was fine. We introduced our older daughter Evie, who was 4 at the time to Emme, she loved her little sister, I was waiting for her to ask questions and she didn’t, she just seen her as she was and accepted that was her.
We spent one night in hospital and although we had questions answered, it was still overwhelming, we just had this beautiful little girl and now I had all these things to worry about, would she need surgery, would she be ok, how will people react when they meet her. I can’t remember exactly when it was, but in the very early days I had a moment when I thought I can’t change this…..I just need to accept it and move forward. We did just that and got on with life, Emme was an easy going baby, she slept quite well from pretty early on. I think I was rewarded with an easy baby as she was certainly an energetic toddler. As I mentioned earlier Emme does things on her own terms. I know it seems silly, but I always felt she had this personality so she could get through anything that was in her way. Anyone that meets her always commented on how amazing she was, this little girl so full of confidence with a massive abundance of attitude.
As I mentioned previously, we had been referred to laser and plastic surgeon specialists. It was decided early on that laser was not an option. Laser may possibly lighten and maybe slightly improve the appearance of Emme’s birthmark but wouldn’t remove it, as she was so young for each laser treatment she would need to have an anesthetic. We felt that as this had no long term benefit and would be an ongoing process so she would repeatedly require an anesthetic, it was not worth putting Emme through this. We also were referred to Mr Brendan Fogarty, consultant plastic surgeon based in Royal Belfast Hospital for Sick Children. We meet him on several occasions over the years, he discussed the option of surgery and what this would entail, they would use skin from Emme’s scalp and use this as a skin graft on her face. This would be carried out over several surgeries, however, this was not a decision we, nor he wanted to rush. After, I think a few years of visiting him he decided that he didn’t think surgery was the best option for Emme, he was concerned that it would not have a positive benefit. I think that day when we left the Royal we had a massive weight lifted off our shoulders, surgery didn’t always sit well with us but suppose we had to explore all avenues and see what was the best option for Emme, so to have the option of surgery removed from us at that stage was such a relief. He did refer us to Great Ormond Street Hospital, he felt that they were more specialised in dealing with CMN. In the meantime we had yearly check-ups with our dermatologist Dr Devereux, photos were taken to keep a record of any changes to Emme’s birthmark. As Emme was hitting all the milestones, it was decided that an MRI scan would not be required.
We did have our referral with Great Ormond Street last year, but as we were coming out of lockdown we had a zoom meeting. We met with Mr Neil Bulstrode, consultant plastic surgeon and Professor Kinsler. It was here on this meeting that I heard for the first time of Caring Matters Now, which seems a shame as I feel this may have been such a help to us in the early days. We did discuss again the option of surgery, however the difference now being Emme is old enough to know what is going on and what we are discussing, she is very sure in the fact she does not want to remove her birthmark. We discuss it and she can’t understand why anyone would, we have came to the decision that this is really a choice for Emme to make. If she decides when she is older she would like to undergo surgery we will support her, but for now she is more than happy as she is.
Emme is now 8 years old, she is still a happy, confident and energetic little girl. We have had no issues with school and she has made lots of great friends, everyone just accepts her as she is. She is confident about her birthmark and is happy to talk about it. She started gymnastics at a young age and she loves it, I do feel that taking part in gymnastics has helped her confidence. Over the years she has progressed from the tiny tots class to training 12 hours a week as part of the WAG squad and has competed at a few competitions this year. There is a wonderful group of girls in her squad that all support each other, this is certainly a massive benefit for Emme having a close connection with friends in sport.
We recently attended our first regional gathering at Tayto Park and Emme loved she had the best day, it was lovely to meet others families that are living with CMN. We are looking forward to the next gathering.
