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Poppy’s Story

Shall I compare thee? By Felicity Volk (Poppy's Mum) Published 2005
ABN: 23543860400
This information on this website is for general information purposes only. It is not intended as a medical reference. Please talk with your doctor for medical advice.
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.