Danielle Kate Sibbons arrived on the 25th November 2001 after a normal healthy pregnancy. Her arrival was anticipated with much excitement by her big brothers Luke 8 and Bradley 5 and her grandparents, who were eagerly waiting to welcome what we already knew to be a little girl to our family. Her name had already been chosen by her brothers and like all expecting parents we had spent the past 9 months building hopes and dreams for her. I had all the usual pre-natal testing that goes with having a child in your 30’s and we were expecting a normal healthy baby girl. Her delivery in the wee small hours of morning was quick but uneventful. The midwife wrapped her entirely in a blanket except for her tiny face and handed her to me. My other babies had been put directly onto my tummy but I thought nothing of this at the time. Our eyes met and I knew I would love and protect this child forever. She had the biggest blue eyes. Then the midwife said Danielle was having some trouble breathing so would need to go to the nursery for a while just while the doctor finished his business then we would be reunited. Alan my husband looked shell shocked, I assumed it was because of the speed of the delivery. The people attending to me were also very quiet but I assumed that was because they were busy. Almost immediately following her birth my parents arrived with her brothers to meet her. They came and saw me then went to see Danielle in the nursery before going home to get some sleep. My obstetrician went to see her also after he had finished with me. He came back and told me everything was alright (the thought that it wasn’t had never crossed my mind) but that she had some birthmarks including a largish one on her neck. Big deal I thought a couple of birthmarks. I think I said something stupid like “that’s ok my other two had stork bites too”. After a while the midwife offered to take me to see her. They wheeled me into the nursery and my eyes immediately went to a crib on the far side. I couldn’t see her face, her back was to me but I knew this was my baby. What I saw was a baby who was covered in black marks, almost her entire scalp, her neck, a little on her face, her shoulder, her elbow, her back, her bottom, her legs. I had never seen or heard of anything like it before, I had no idea what was happening to my baby girl. I was gripped with the most horrendous fear for this child and at the same time filled with such love and protectiveness. I reached in to touch her and she woke. I fed her for the first time and knew that I would do whatever I had to for this baby. She was so beautiful. The next few days were filled with a blur of doctors, information and brave faces. Alan and my mum started hunting on the internet for information about these birthmarks and what they found was not good news. While my heart broke it also filled with intense love, I knew I couldn’t bear to lose her, I was so afraid. I was also consumed with guilt. What had I done to her, to my boys, my husband, my parents? It was all my fault and I had ruined their happiness. Danielle's Condition I learned that what Danielle had was a birth defect called Congenital Melanocytic Naevus. That she might have melanoma and even if she didn’t she still had a high risk of developing it at any time. That the abnormal cells can also accumulate on the brain and spinal cord causing all kinds of neurological complications and could be fatal. I learned that it was a very rare disorder affecting only about 1 in 500,000 in the giant form which she had. I learned that the birthmarks also become hairy and more raised over time. I was so afraid for her, for us. Would we lose her? What would her future hold? Later I would also learn that she will continue to develop more of these birthmarks as she gets older. Now she has hundreds. The Nevi (as the birthmarks are called) can occur on any part of the body and are not a genetic condition. There is no way to prevent them from forming on the skin or in the central nervous system. Danielle's Treatment When she was one week old we met with Mark Moore a plastic surgeon who recommended immediate removal and biopsy of the largest birthmark and a few of the others also. At 9 days of age Danielle underwent a huge operation called curettage with Doctors Mark Moore and Michelle Lodge to peel her skin off. She lost a lot of blood and spent several days in intensive care including 4 on a ventilator. I couldn’t hold her, I couldn’t help her, I could only be there for her and hold her tiny hand. The staff at the Womens and Childrens Hospital were great, but it was a lonely time. I was lucky I was allowed to stay with her but it was difficult on the rest of the family. It was Christmas time and I missed a lot of the usual school Christmas stuff and shopping was a problem. I couldn’t bring myself to leave her even to sleep or eat. Thankfully her pathology report came back negative for melanoma. Eventually she moved to Newland ward where we had our own room. Things started to feel a little better as visits became easier on the boys. I don’t know how Alan and my parents coped but they did a wonderful job holding everything together. I sat in that room thinking Danielle was the only one that had gone

By Michelle Sibbons (Danielle's Mum) published 2002

through this and it was lonely and frightening. On Christmas Eve 2001 we were allowed to go home overnight as long as I had her back the next day. We made the most of our time together and it was lovely to have her home at last even if it was just for a little while. It was great to wake up on Christmas morning with the squeals of delight from the boys. Father Christmas truly did come to us that day, when we went back into the hospital, the doctors decided to discharge her to day patient status. Her healing success was varied. Most of the wounds healed well and we were thrilled with the results but her scalp refused to heal. Infections and a stubborn refusal to heal left Danielle with an open wound and dressings on her head for a year. 3 days after her first birthday she underwent a skin graft to her scalp. It was a success and by February she was dressing free for the first time in her life. In May at the age of 18 months she underwent an MRI to find out if she had any clusters of the abnormal cells on her brain or spinal cord. This was a frightening time as the presence of these cells would greatly increase the risk of this condition becoming fatal. The MRI was clear. This doesn’t mean that she wont develop any later but for now she is free of them. She will have another MRI in 2 years time. This time of intense treatment and the steep learning curve are somewhat of a blur for me. We made often daily trips to the hospital and she spent a total of 6 weeks as an in patient and endured 6 anaesthetics as well as a concoction of creams, drugs and supplements along with intense pain daily. Along the way we have met many wonderful people including her plastics team Drs Mark Moore and Michelle Lodge, Dr Lachlan Warren her dermatologist, Dr Paul Lang her paediatrician, Lesley her social worker, wonderful nursing staff ( including her favourite Matt ) and many other wonderful caring people who have made a great difference in her life. I will always be deeply thankful to those people who have cared for her and for us. Danielle will face a lifetime of medical treatment for her condition as suspicious areas need to be removed, excess hair growth needs to be dealt with, skin grafts need to be maintained, cosmetic considerations need to be addressed, MRI’s need to be done and a host of other things we have yet to discover. Danielle has been left bald on the majority of her scalp and while she loves her hats, this in time will also need to be dealt with as she can not get sun on her head. Perhaps plastic surgery can help her down the track or perhaps she will choose hats or wigs. What I have learnt Danielle will face a life with unusual challenges in our ‘lookist’ society but often great character is built from less than ideal circumstances. Along the way I have learnt a lot about tolerance, compassion and strength of character. I have learnt that this world is filled with good, kind and caring people just as it is filled with cruel and judgemental people. I choose to surround myself with the good and ignore the latter. I am developing a thicker skin as time goes by but the stares and comments are still difficult to take at times. I hope that I will be able to teach Danielle to love and accept herself as she is – a truly wonderful person. That she will be strong enough to cope with the inevitable barbs of society and like me chooses to surround herself with good people leaving the rest to their shallow lives. Not a day has gone by that I have wished this didn’t happen because if it had never happened we would never have had Danielle in our lives and I am thankful everyday that she is in our lives. Of course that doesn’t mean that if I had a magic wand I wouldn’t wave the nevus away but that is a part of who she is and I think she is just perfect. The hope Looking for information on the condition I trawled the internet, thankfully coming across a support group for the condition in America with nearly 800 world wide registered members. I found answers and comfort as well as friends there. They gave me some email addresses of other families in Australia whose children had the same condition. I contacted some of them and eventually when Danielle was around 6 months old an Australian based support group was started with 3 members. That has now grown to around 50. Far more families than I ever believed were affected by this. The support and friendship given by this group is invaluable and we have all benefited immensely from our contact with each other. My hope is that we can bring together children with this condition so that they know they are not alone. They face huge medical, social and cosmetic hurdles and it is important that they have a friend who understands. I am currently working on an update to this story. Danielle is now 13 years old. Feb 2015

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