Skye's story
Skye was born on 4th November 2001, after a long and
traumatic birth. Her face was very bruised from the forceps and she
was also very jaundiced and had to spend the next 48 hours under UV
lights. The doctor at the hospital was concerned about a mark that
hadn't faded from Skye's face.
At 4 days old, it was mentioned that the mark could possibly be
a port wine stain and a specialist came to check her eye pressure
for glaucoma which was fine. At 5 days old, we were told we could
go home.
We went home and looked around to get more information about
port wine stains while trying to come to terms with a new baby and
what the future would hold for us.
Within the first two weeks of her life, the upper left side
of her face began to swell and the colour became a lot darker, as
well as her eye weeping very badly. A visit to the GP got us a
prescription for eye cream, which didn't help. She also had a
blocked nose and cough and she was refusing to eat and we were told
it was just a cold. We also noticed that she didn't like to lie
flat and preferred to be higher up. For the next 2 weeks, she spent
a lot of time asleep on her Dad's shoulder as this is when she was
most comfortable. By the time she was four weeks old, her left eye
was totally closed.
By now, we were very worried. We'd done more reading on
the subject and thought that it could be a Haemangioma because of
the swelling. At 5 weeks old, she was still suffering from this
"cold" and struggling to breathe and then she started to turn blue.
We rushed here to the A&E, where they were more concerned about
how she'd banged her face than helping her to
breathe!
She was given oxygen then she was admitted and put on a
nebuliser. On the second day of being in hospital a nurse noticed
some redness in Skye's mouth during a feed and called a consultant
who dismissed it. We had already noticed this and told the doctors
about it previously. The nurse remained concerned and called a
second consultant who transferred Skye straight away to Pendlebury
Children's Hospital (now the Royal Manchester Children's Hospital),
where we met Mr Rothera, ENT Specialist, who performed an emergency
endoscopy and then confirmed to us that Skye's airway was blocked
by the haemangioma, some 80%.
He took her into surgery for a tracheostomy and told us
that she had a sub-glottic haemangioma. Skye was put on a high dose
of oral steroids to reduce the swelling and was in hospital for 6
weeks. Whilst we were in hospital, she had an MRI to rule out any
internal haemangioma and PHACE. This came back clear. Once we had
mastered the trachy care and changes, we were allowed to go
home.
It was hard work dealing with the stares, but in addition,
we had to deal with the issue of a child with a trachy. We tended
to stay in a lot in the first year; however, we got to understand
the noises and could deal with the issues of a trachy. Skye was
very responsive to the steroids, which she was on for a year and
they did a great job of reducing the swelling and redness. Along
the way, we encountered ulcerations, which are horrendous things,
and Skye has ended up losing half her eyelashes on one eye and has
scar tissue on her upper lip from them.
We were under Mr Rothera's care until Skye's trachy came
out at 17 months! What a relief to hear your child after such a
long time! He referred us to GOSH and after speaking with Jane and
Dr Syed, Skye went for her first laser treatment at 2 years and 2
months. Her stoma was closed when she was nearly 3 years and we
were discharged from Mr Rothera. In all, she had 4 laser
treatments, at 3.5 years, 4.5 years and her last one was at nearly
7 years old. At this stage, the laser wasn't having a big effect
and so we decided against any more treatment.
Skye will be eleven in November and is such a beautiful
girl. She has her down days and is a typical nearly eleven year
old, but she has come so far and every day we look at her and
remember what she has been through. We hope that Skye's story can
bring hope to others who are on a similar journey.