Lizzie's story
Lizzie was born on the 4th August 2009, she had a slight pink
mark on her nose that I assumed was a small bruise from the
birth.
Over the course of the next few weeks the small red mark became
bigger and her nose started to change shape. We went to our doctors
and on the 17th December 2009 we had our first paediatric
appointment at Gloucester and our first appointment at Birmingham
Children's Hospital followed on the 9th March 2010. By this time
Lizzie's nose was very red and growing!! Her vision & airways
were checked but were fine. The doctors were lovely and despite
reading stories in magazines which filled me with dread of children
having to be wrapped in cotton wool or they would bleed to death if
they grazed their noses they reassured me this was highly unlikely
so Lizzie has had a completely normal childhood including scrapes
to her nose (me with her under my arm running like a lunatic across
the school playground expecting a gush of blood...which didn't
happen!!).
Lizzie started a 3 week course of Prednisolone with the hope of
reducing the haemangioma and so started out frequent trips to
hospital for monitoring. She was on this for 4 weeks and
unfortunately it didn't work, she was described as looking cushoid
and also her appetite had increased too. So on the 4th May 2010 she
started a course of Propanalol, apart from the battle of giving it
her, she was fine and had weekly trips to the hospitals but again,
it didn't work.
Dr Shahidullah felt that surgery would be an option before she
started primary school so an appointment was made with the
paediatric plastic surgeon. We met the plastic surgeon, Mr
Nishikawa in July 2011 when we were told the haemangioma was still
active and not ready for surgery and we attended a further visit in
September 2012 where we were told that Lizzie would have her 'nose
job' in 6 months time.
Lizzie's nose is still the same odd shape, the redness is going
but she's left with a blue tinge due to all the capillaries under
the skin. She has been completely healthy throughout, the worst
part of this has been from other people, some times their looks are
worse than their words. We got off the train from the hospital in
September 2012 and a man was staring at her with such a look of
disgust I could have cried. I've even been asked if I hurt her and
if I'd pinched her nose. However, there have been lovely people too
who simply asked what it was. Christmas is always a bad time for
Lizzie with the constant talk of Rudolph!
She is now booked to have her surgery on Feb 18th 2013. Her nose
has never bothered her, she's never felt it was different, but she
knows now that it will be changing and we are trying to prepare her
for this, but she seems fine so we're not making a big deal of it.
Just chats now and again and we are getting a book about visiting
hospital. Lizzie is excited about her trip on the train and visit
to hospital to see the doctors...I'm the one who is
worrying......