Poppy’s Story

Shall I compare thee? By Felicity Volk (Poppy's Mum) Published 2005

The irony about the last push you give to expel a baby from your body is that you think it marks the end of all travail, that you have arrived at a crossroad with a sign pointing behind you which reads Pain and another declaring the road ahead Joy. But that’s not always the case. On a cold July night in 2002, I was kneeling beside a bed in the Canberra Hospital birth centre. It had been a mercifully brief labour. Still, I was exhausted and relieved it was over. The midwife placed my baby between my splayed legs as my partner, Peter, cut the umbilical cord. In the dim light, I looked down. My chest constricted and I said, “Oh no”. Half my daughter’s face had the healthy ruddiness of birth, half was covered by a deep purplish-black mole, hairy, and etched with the wrinkles of old age. Her body was splashed with smaller lesions from scalp to toes. Within 24 hours we had graduated from the hospital residents who offered the lame reassurance, “They might fade” to the institution’s chief neonatologist who said she had seen similar birthmarking but nothing as serious and she wanted to send us to specialists in Sydney. A week later we made the first of many treks along the Federal Highway to The Children’s Hospital at Westmead (CHW). We returned home the following day armed with a name for our daughter, Poppy Anouchka, and a name for her condition, Giant Congenital Melanocytic Naevi, GCMN. Knowledge is the buoy that doctors throw to parents flailing in the fathomless waters of their child’s suffering. When Poppy had been gestating for about six months, my mother had worried that her grandchild might be feeling slighted by our failure to give her a pregnancy nickname. She asked me what I thought my growing baby was like, as if there are seismic personality vibrations which tremor from the uterus, erupting in maternal intuition. Maybe there are. I used words like wild, defiant, headstrong, and self-reliant to describe my child. I said she seemed flamboyant and yet guarded. That she didn’t care what others thought of her and yet she was fragile and needed to be protected. My mother suggested “Poppy”. A tall red vivacious bloom, head above the field, but fragile. Poppy stuck. Anouchka, the Russian version of Anne, means grace. And as we became more closely acquainted with the medical implications of Poppy’s condition, we realised how well she had been named. One in every hundred babies is born with a small mole; approximately one in 20,000 has birthmarking like Poppy’s – severe enough to qualify for the tag, “giant” naevus. Most practitioners define this as a birthmark which will reach 20 centimetres in diameter in adulthood. For a parent, no ruler is required. Moles are giant when kids in the playground start using terms like ogre. No one is sure why GCMN occurs. As yet no genetic link has been identified. Poppy’s surgeon employs a useful analogy with newcomer parents, likening the condition to the unzipping of an electronic file. The file itself - the genetic matter - is good, but a corruption occurs in the process of unzipping. With the cosmetic implications of GCMN comes an increased risk of melanoma, but only in the order of 1% - 5% according to most studies. In addition, birthmarking involving the eyes or other sensory organs can spell impaired functionality. The complications escalate dramatically if the errant cells are also present along the spinal cord or in the brain. When Poppy was 10 days old we sat with her in an MRI chamber while her brain was scanned for signs of trouble. Over an hour of imaging, the equipment droned - a foghorn through the thick mist of our fears. After an anxious four day wait, Poppy was given the all clear. We were only dealing with cosmetic issues; yes, severe, but they were just cosmetic. Grace. Paediatric plastic surgeons like to begin treatment for children with disfiguring conditions early, before the child becomes fully aware of the trauma of the procedures or acquainted with the anguish of being different. In the case of GCMN, an additional impetus is the intent to remove as many melanocytic cells as possible to prevent malignancy. For birthmarking like Poppy’s, the more common menu of treatment in Australia includes skin grafting, tissue expansion, laser, curettage and dermabrasion. We began with dermabrasion when Poppy was five weeks old, a process of scraping off the top two layers of skin in the hope that the new dermis will be less severely pigmented. Like many of the really good scientific breakthroughs, this procedure was discovered by accident. In 1977 an obstetrician, Johnson, noticed that a naevus abraded by forceps during childbirth did not grow back. Since then, curettage and dermabrasion have been used to treat naevi, but most commonly in very young babies when the best results are achieved. In total, Poppy has had five lots of surgery and seven laser sessions, the latter an assault on the hair that grows in the naevus site. Between treatments, she has spent long stints in a pressure face mask to reduce surgical scarring. Poppy’s first few years haven’t been easy, but not a day has gone past without our unequivocal celebration of her presence in our lives. Love for one’s children is profound - but there’s an especially tender quality to that love when you are regularly reminded how fragile your child is. Seeing Poppy emerge from surgery in a helmet of bandages, attached to a morphine drip, waiting for her to come to life again after general anaesthesia, witnessing what’s under those bandages during the early stages of healing, fielding questions from sometimes rude and insensitive strangers – the more bruising the encounter, the greater our gratitude for our daughter. Poppy’s capacity to bounce back from surgery, her joy in a world which hasn’t been consistently kind, and her irrepressibly sunny nature have all helped me to silence the occasional nagging voice – my own and others’ - that she’s been dealt a bad hand. Children’s hospitals are helpful places for putting one’s circumstances into perspective. The wards of CHW have convinced us that in the lucky dip at the confluence of two gene pools, we didn’t do too badly. While the clinical aspects of Poppy’s condition punctuated and shaped our first two years with our daughter, the emotional, social, and spiritual defined them. In the aftermath of Poppy’s arrival I was in a long, slow state of shock, grieving as much as I was falling in love with my daughter. On good days I took solace from a conviction that Poppy, her family and the people who were lucky enough to know her throughout her life would be better off because she had this challenge to contend with. On bad days I roamed in the territory of the Old Testament, wondering about the sins of the parents being visited on their children. On both good and bad days, however, I was not inclined to think, “Why us?”, but rather, “Why not us?” And where in the past I had seen families in similar circumstances and thought, “There but for the grace of God go I”, I was soon saying “There with the grace of God we go”. I was not the only person who found it necessary to interpret our circumstances through a primal prism. Total strangers were not shy in inflicting their cultural concepts on us. During one of my longer stints in hospital with Poppy, I noticed a cleaner eyeing my breakfast fare - an unassuming bowl of cereal and stewed prunes - with suspicion. “Did you eat those when you were pregnant?” she inquired in a thick accent, pointing to the prunes. When I assented, she nodded sagely. “That’s why your daughter has birthmarks. You should never eat dark fruit – plums, cherries, prunes, black grapes, when you are pregnant. If you do, you must touch yourself here.” She tapped her ample posterior. If only I had known. The hospital cleaner was one in a parade of women who shared their unsolicited views on how I had contributed to my daughter’s “tragedy”. Not that I needed assistance in feeding my maternal guilt. It was some time after Poppy’s birth before I could venture through the door of a hair salon for a colour, or take a swig of cola – two of my pregnancy indulgences. My anthropological meanderings didn’t just take me back to my Christian heritage. In the early days, I also spent considerable hours trawling the net for information on remote tribes, lost civilizations, better still existing cultures where birthmarking was regarded as a sign of beauty or good fortune, the kiss of God rather than the mark of the devil. I found none. My web searching, however, led me in the direction of a community forged by the shared experience of physical disfigurement. There are several support groups for people affected by GCMN, one of them – a band of warm, inspiring, embracing families – is based in Australia. All tribes develop a mythology to explain to their young the vagaries of the universe. The “nevite tribe”, as I’ve affectionately come to

regard it, is no different. An American grandmother of a little girl with GCMN posted on a web message-board her explanation to her granddaughter of the origins of her naevi. She said that when God was preparing to send her granddaughter to earth, he knew how special she was and how much he was going to miss her. Just before she left heaven he held her close and left hug marks on her so she would always be reminded how much he loved her. Around the time of Christ, in the Roman Republic, by law the family patriarch would have been obliged to put a child like Poppy to death by exposure. When infanticide was outlawed, a little opium residue on the nipple for the suckling child would have done the trick without nasty legal ramifications. In the 1600s, Poppy’s birthmark would have been interpreted as a witch’s mark and she may have been persecuted for vampirism, werewolfism or witchcraft. Two hundred years later and she could have been found in a freak show. These days she faces the cruelty of the school yard (“werewolf”, others report, is still a preferred taunt), and if you look at raw statistics, a harder time getting a job, a harder time getting promoted, and a harder time getting married. Since Poppy arrived, I have watched television, listened to music, read press reports and literature, and assessed social encounters through the lens of her challenges. She is my litmus paper and my prejudice. I have played Christina Aguilera’s Beautiful so frequently that Poppy, at three, can parrot the chorus: “I am beautiful, no matter what they say, words can’t bring me down”. I gravitate towards books in which asymmetry is embraced and beauty is flawed. When Murray Bail cast his heroine as a “speckled beauty” in Eucalyptus, he may not have been thinking in terms of a severe case of Congenital Melanocytic Naevi, but I imagine Poppy for Ellen’s role. Elizabeth Kubler-Ross wrote, “People are like stained glass windows - the true beauty can be seen only when there is light from within. The darker the night, the brighter the windows”. Some windows are more stained than others. I’m inclined to think that, as with an actual window, this simply serves to enhance the final picture. Poppy glows with a rich inner light. I have seen the way it falls on the people around her, breathtakingly beautiful. And I pose a question to myself sometimes, if I could have made sure Poppy was born without GCMN, would I have intervened to do so? Well, probably yes, but only if nothing else about her was changed. Then what about all the wonderful qualities she will, we hope, develop as a result of her challenges? And what about the way it refines the people around her? How is this weighed in the balance of suffering versus good? I’m glad I’m not God. When Poppy was a year old we embarked on a national fundraising campaign to buy a hair removal laser to treat Poppy and her peers at The Children’s Hospital at Westmead. It took just on a fortnight of prime time television coverage to raise the funds. Poppy’s story touched a nerve of kindness and, judging from the delightful messages we received from school kids around the country, got people thinking about disfigurement and social responses to people who don’t fit the mould. More light falls. After enduring years in Nazi death camps, internationally renowned psychiatrist, Viktor Frankl wrote Man’s Search for Meaning. In it he observes, “When a man finds it is his destiny to suffer, he will have to accept suffering as his task… His unique opportunity lies in the way in which he bears his burden”. I have no control over the hand that was dealt to my daughter, but I have a role in how it is played. If we ask, “What did we do to deserve this?” we end in bitterness and then Poppy truly will be damaged. Alternatively, if our focus is, “What good can we make out of this?” Poppy’s spots become a force for good, not just a challenge to be overcome. I am impatient with the “poor thing” label which well-meaning strangers in shopping centres sometimes attach to Poppy, and trust she will never subscribe to this view of herself. My hope is that the girl who derives such delight from herself in the mirror will always take pleasure in her reflection. And that she will be as proud of her appearance as we are; proud of her beauty, her birthmark, all the challenges it embodies and therefore all the strengths. Ahead of Poppy lies the possibility of tissue expansion to recreate a normal hairline and perhaps in other areas of her face which haven’t responded well to previous treatment. When she’s older her eyelids will be skin grafted and her eyebrow reconstructed using a transplant from her scalp. Yet as Poppy matures, and likewise we her parents, the definition of necessary surgery becomes more elusive. I no longer see my daughter’s birthmark, partly because it is less obvious these days thanks to the skill of Poppy’s surgeon, Dr Peter Hayward, but mostly because I have a mother’s eye. Through it, Poppy is simply a thriving, gorgeous girl. When we’re in public contexts, however, I also get to see her through the sometimes critical, always curious gaze of a stranger. That stranger will one day be deciding whether Poppy’s photo appears in the school magazine, whether to offer her a job, whether to chat to her while she fills the tank with petrol. As Poppy’s surgeon says, “I have many patients who are hard to look at, who are happy and they’ve come to terms with their lot. But by the same token they have to get jobs, they have to get on trains, they have to get on buses”. Whatever euphemism we settle on, a disability – intellectual, physical or aesthetic – is often just that because society chooses to interpret it that way. Society is lookist. To be outside the norm, however spuriously those parameters are drawn, promises an encounter with a social framework which at its worst can be cruel and dismissive, at best embracing and affirming. Where then do we draw the line between putting our daughter through seemingly endless rounds of surgery to make her look more like her peers and instilling in her the conviction that she doesn’t need to change, that she is infinitely loveable just as she is? To what degree can both these efforts be embarked upon simultaneously? We have yet to find answers to these questions. I suspect there are none. At each planning consultation with Poppy’s surgeon, it seems we are involved in a precarious balance between “whither Poppy?” and “wither Poppy”. The mystery of beauty is that it can be both in the eye of the beholder and defined by universal principles. Put a series of portraits in front of my four year old daughter, Isabella, and she will gravitate towards the ones which the majority of people, whatever their own cultural heritage, will regard as beautiful. But until recently, if asked if her sister has a birthmark and she would say “no”. Ask Isabella if Poppy is beautiful, and she will insist “yes”. Despite all the evidence to the contrary - her own visual witness, the attention Poppy’s appearance generates in strangers, as well as the incursions on our family life wrought by frequent trips to hospital - Isabella has to be led, incredulously, to an acknowledgement that her sister has spots. But Isabella’s inability to see Poppy’s face through the eyes of a stranger does not prevent her applying a stranger’s eyes to others with irregular physical attributes. She will want to know, and usually in a preternaturally loud voice, why that person is fat, or why this one has a port wine stain across her face. “It’s like Poppy,” I will say. She just looks at me blankly. The eye grows accustomed to whatever is before it, just as the spirit comes to accept as normal any circumstances with which it contends. This is our blessing and our curse. It makes life tolerable but it can also make us complacent and disinclined to seek change where change may be required – for example in social attitudes towards “disability”. The paths we would not have chosen for ourselves often prove to be the most profound and rich. Poppy’s arrival has taught me about our ability to adapt to the unexpected, about randomness, about grace, and about the imperative of not looking backward. She has led me to places I may not have reached alone in my understanding of the importance of community and offering small acts of kindness to each other, of our propensity to become institutionalised and defined by a medical condition, and conversely the importance of dispensing with labels such as “disfigured”. And she has given me insight into the way society responds to disfigurement specifically and disability generally. These are the gifts I thank her for at the close of each day. Our night-time ritual is an elaborate repertoire of story telling, prayer, song and poetry. The children are a sponge for new material and, perhaps more compellingly, are always after an excuse to delay bedtime. Most recently, we have added Shakespeare’s Sonnet 18 to the evening billing, one of few enduring relics from the days when I knew poems by heart. ‘Shall I compare thee to a summer’s day? Thou art more lovely and more temperate.’ It’s a heartfelt recitation to both my girls. At three and four years of age it has to be said, they are not uniformly temperate. Lovely, though? Without a doubt.

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