© 2015 Nevus Support Australia PO Box 262, Seacliff Park, South Australia 5049  

Tom’s Story

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.
It   was   a   big   decision   for   me   to   have   a   third   baby   as   I   have   type   1   diabetes   which   puts pregnancy   into   the   “high   risk”   category,   but   David   and   I   wanted   another   baby.     At   36   weeks   my doctor   was   very   concerned   about   extreme   maternal   antibody   levels   and   planned   a   semi- emergency   caesarean   section.      Unfortunately   David   was   in   England   on   business   but   got straight   on   a   plane.      My   mother   came   with   me   for   the   birth   on   Saturday   1st   July   1995.      The paediatrician   said   my   baby   son   had   a   birthmark   from   knees   to   navel   and   I   didn’t   think   too   much about   it.   Tom   was   taken   to   the   special   care   nursery   which   is   standard   procedure   for   babies   of diabetic   women.      Later   the   paediatrician   came   to   see   me   and   said   my   baby   had   a   giant congenital   bathing   trunk   nevus   which   was   unrelated   to   my   diabetes.      The   following   day   David came   from   the   airport   and   together   we   went   to   the   special   care   nursery   to   see   Tom.   We   were alone   with   our   son   and   un-swaddled   him   to   check   out   his   birthmark   -   a   mid-wife   had   warned   us that   it   was   very   big.      When   we   saw Tom   we   were   shocked   and   very   upset.      I   cried   a   lot   of   tears over the next few days and I had a lot of guilt. The   usual   round   of   inquisitive   doctors   came   through   and   one   young   doctor   asked   me   how   I was   coping   with   such   a   rare   and   huge   birthmark   –   it   was   nice   of   him   to   ask   even   though   it   was a bit of a silly question! Tom   was   a   delightful   baby   and   a   super   gorgeous   toddler   who   made   us   laugh   constantly.      I   was fairly   protective   of   Tom’s   nevus   and   mostly   kept   it   covered.      We   saw   a   variety   of   doctors   who gave   us   conflicting   advice   and   information.      Tom   kept   seeing   the   paediatrician   until   he   was about   12   and   he   still   sees   the   original   dermatologist   and   surgeon   who   saw   him   days   after   he was   born.      Tom   had   some   “tidy   up”   surgery   on   his   back   at   4   and   8   months   of   age   which   we   all dealt with well.  Due to the size of Tom’s nevus removal wasn’t suggested. When   Tom   hit   puberty   two   large   lipomas   (fatty   tissue)   grew   gradually   from   his   hips   and   were   removed   separately   when   they   became   very uncomfortable   and   unsightly.     Tom   has   also   struggled   with   other   problems   including   speech   and   learning.      Over   the   years Tom   has   had   the   odd mean   comment   from   boys   at   school   but   he’s   coped   amazingly   well,   only   needing   a   few   sessions   with   a   psychologist   to   help   him   during   his teenage   years.      His   siblings   and   extended   family   around   him   haven’t   treated   him   any   differently   which   is   mostly   good   but   sometimes   I   know Tom would have liked a bit of extra sympathy.  Tom   is   now   18,   has   finished   school,   has   a   part-time   job,   has   a   very   nice   girlfriend   (who   is   ok   with   his   nevus)   and   is   a   well-adjusted   young   man with   a   bright   future.      Tom   is   a   special   person   who   has   a   deep   sense   of   caring   for   others.      He   is   rather   shy   but   has   a   great   sense   of   humour once   he   gets   to   know   you.      If   I   had   one   magical   wish   it   would   be   to   swap   his   nevus   for   normal   breathable   skin   as   Tom   suffers   so   much   in   the hot   weather.     Tom   is   slowly   becoming   more   at   ease   in   his   own   skin.      David   and   I   are   very   proud   of Tom   and   wish   him   every   success   in   his   adult life.
By Jenny Roberts (Tom’s Mum) Published 2014