Elijah was born on 2nd May 2014, after a healthy, normal pregnancy. Our daughter had been born 16 months previously and having been induced to begin a 53-hour labor with her, we were delighted at Elijah’s easy arrival! We were “ready for this,” and we’d “had a baby already”- we were going to “really enjoy it all this time!”
Elijah was born with a 10/12 cm black mark on his scalp, and a deep cut on his scalp as well. He looked like he had had a difficult time. The midwives said he must have cut his head on my pelvis on the way out and that the mark was bruising. This didn’t sit well with me, but I thought they knew better, the pediatrics gave him a once over the next day before he went home and were happy there was nothing to worry about.
And then the everyday began. Elijah was a very unsettled baby. He cried every time he was awake, the health visitor spent a lot of time with us and agreed he was extremely irritable. This started to put strain on Adam and I, and in hindsight Ari’Ela took a bit of a back seat.
I only admitted to it a year later, but I had really struggled in these early days… his mark was so obvious, and everywhere we went people looked and asked questions “will he grow hair?” “Is it sore?” All questions that I had no answer to.
We went to the pediatrician in August 2014, up until then we thought his mark was a birthmark and the only problem was that it cut very easily. I still remember the moment that the consultant walked out of the room after telling us that this was a condition called ‘Melanosis’, asking about limb movement, explaining that there was a risk of cancer, brain and spinal tumors, learning disability and mental health problems. Adam and I looked at each other in disbelief. It must have been around this time that we met with Dr Alderdice, our dermatologist, he told us that Melanosis was an old term and told us about CMN, Dr Kinsler and Caring Matters Now. We now had somewhere to go for information!
We were referred for a brain MRI and would try that as soon as possible without anesthetic- just using the bottle and swaddle technique.
This didn’t work. The machine was too noisy and Elijah kept waking up, rather than cause him distress, we came back when he was 6 months old and he went under anesthetic. Waiting for the MRI results was nerve wrecking but they eventually came back as being clear.
The day after Elijah’s MRI the ‘One Show’ did a coverage on CMN and we told all of our friends and family to watch it. There were some very sad stories shown, Adam and I felt teary, the future was unpredictable. That night we contacted Caring Matters Now, explaining how isolated we felt in Northern Ireland and asking them what the prospects would be, “do children with CMN live a happy and healthy life?”
I was then put in contact with our regional support worker Bronagh Cleland who had shared similar experiences with her little boy Ryan, it was so refreshing to meet someone who knew what they were talking about!
It was the uncertainty of the condition and the rarity of it that made us so fearful. Up until we were put into contact with Caring Matters Now nobody seemed to know a lot about the condition, it seemed to us that either he would have cancer now, or that he would in the future. We would see posts on social media about children who had died due to complications associated with the condition and I found myself looking at the kids thinking “I need to remember this moment incase something happens to Elijah.” It was unhealthy thinking, but it felt rational at the time.
Great Ormond street was a turning point for us, Adam and I hadn’t spoken to each other much about our worries and we finally sat down to chat over a Pizza Express before our appointment, having just found the hospital. It was a strange feeling- is our child really sick? Why are we at Great Ormond? (We’ve only ever seen this on the TV!) I asked Adam what he was believing for at our appointment- he was hoping we would be told this was the least threatening type of CMN, I thought he was naive and unprepared for the worst. I had resolved myself to know that God was good and sovereign no matter what, but whilst we are usually an optimistic couple we were feeling fearful.
Dr Kinsler was so comfortable with CMN, she didn’t feed into the fear, infact she took one look at Elijah and said “well, he’s doing well isn’t he?” She went on to say that his was one of the least threatening types.
We’ve had no complications with Elijah so far, other than his head cutting and dry skin on his scalp. Adam asked about sports in the future, would Elijah be able to play hockey or rugby? Dr Kinsler reassured us not to limit anything for Elijah unless we found that something led to lots of cuts and then we might want to adjust it! We came home feeling like Elijah was finally ours, we felt in control, and we realised we probably hadn’t completely bonded with him out of fear of losing him.
When you are faced with a rare condition like this, you take in every single word a health professional says as you’re searching for knowledge and security. Having met Dr Kinsler we feel so much more equipped- we know we have the best knowledge, we are now the experts with other doctors and dermatologists at Elijah’s appointments and we have been fortunate enough to be surrounded by medical professionals who have been honest enough to say they “don’t know” and are willing to learn from us!
We feel very much that we have regained control and we are out the other side, but we wouldn’t be there without Caring Matters Now! Elijah knows he has “special skin” and we will continue to encourage him to be confident and comfortable in his own skin. Elijah is turning 8 years old in May, he didn’t end up playing rugby or hockey after all…instead he is a football goalkeeper and plays for Glasgow Rangers Academy! Having CMN has not held him back from anything he would like to do! We wear sun cream on sunny days, we wash his hair with therapeutic shampoo and we often have to moisturize his scalp. He has grown his beautiful thick hair on his CMN into a top knot and often wears it braided. He has since developed vitiligo also and has grey patches of hair and symmetrical white patches on his face. He is proud of his difference, enjoys teaching people that he has CMN but doesn’t like anyone to think that it limits him in anyway or to be overprotective of him.
School has had its ups and downs. In Primary 1 another child laughed at the marks on his legs, Elijah didn’t tell us what had happened but it was obvious in his behaviour that something had made him unhappy. We were getting ready for our first holiday in the sun, we chose to go away in May to Spain as we were concerned about the heat and UV and I had bought UV suits for the kids. When I showed Elijah his, he said “Oh great! I can hide my skin!” We were heartbroken, we spoke to school and they led a circle time to educate his class and things quietened down. Two years later in Primary 3 an older child laughed at Elijah’s grey hair in the dinner queue. Again, Elijah didn’t tell us what had happened but eventually told us as we put the Christmas decorations up as a family. I think Christmas had brought him so much joy that he remembered why he hadn’t been feeling so good. This time I knew we needed a different approach, it wasn’t only his class that needed educated…it was the whole school. I spoke to the Headmistress who was so supportive and agreed that education was key, and I was invited to lead an assembly. By choice Elijah stood beside me at the front of the hall, nervously counting his fingers. We have had no problems since!
Over the years we have also committed to annual fundraising, understanding that Dr Kinsler’s research is funded by the charity and that the support we received changed our lives! We have ran marathons, grown beards, had numerous coffee and cake sales and our family members have done even more incredible things than these. Elijah has a sense of identity which is inspiring, Ari’Ela has an understanding of difference which is invaluable and as a family we have gained a life perspective which we wouldn’t change for anything.