Arthur was born in
July 2017 and appeared to be a perfectly healthy boy and passed through the
normal health checks without any cause for concern. From the outset he was a very happy and
contented character and for the first 5 months of his life everything seemed
fine.
Sadly, that all
changed and his parent’s world unravelled on January 2nd 2018, a day
that neither will ever forget. Dad had
returned to work that day in the Royal Navy following the Christmas
holiday. Working away during the week,
whilst his family resided in mid Devon, he phoned his wife that evening at 8 pm
as he did most nights.
Whilst on the
phone to dad and holding Arthur in her arms, he suddenly went completely limp
and lost all tone in his head and limbs.
Mum hung up and dialled 999 immediately.
Feeling incredibly helpless dad got in his car and began the drive
home. Sadly, the ambulance took over 20
minutes to arrive at their home and by the time Arthur was admitted into
hospital an hour had passed during which time both mum and paramedics had
applied mouth to mouth resuscitation, desperately trying to keep him alive.
The next 3 months
were a deeply distressing time for all of them.
Arthur was stabilised first in Exeter hospital and then moved to Bristol
Children’s Hospital where he was fully diagnosed and treated. On examination it transpired that Arthur had
a benign tumour on the inner chamber of his heart which had caused a cardiac
arrest. Worst news was to follow when an MRI scan revealed that Arthur had
experienced severe brain damage as a result of the cardiac arrest with his
future prognosis extremely bleak. The family were warned that he may be
deprived of sight, any physical movement and basic cognition. The
family were at rock bottom.
The next few
months were hard however it slowly became apparent that there was hope for
Arthur. Bristol Children’s Hospital
provided wonderful care and after 2 weeks in intensive care, a recovery plan
was put in place to address both his heart defect and his subsequent
neurological injuries. During this time, mum lived with Arthur in the hospital
whilst dad took compassionate leave to look after their older son. The family
spent the weekends together as best they could and were supported hugely by family
and friends. The Royal Navy were also
incredibly supportive for which they will always be grateful.
With each passing
week it became clearer as to the extent of Arthur’s injuries. He retained his sight and what’s more the
twinkle still in his eyes gave them continued hope. It was decided that strong medication and the
installation of an internal pacemaker was the best course of treatment in the
short term however we were advised that the long-term solution was the removal
of the tumour, an operation so specialised that it could not be conducted in
the UK. Furthermore, it was an operation
that would not be funded by the NHS.
Nonetheless, they
were determined to do the best for Arthur and set about making preparations to
take him to Boston Children’s Hospital in the summer of 2019. It was here that a pioneering surgeon had
developed ground-breaking surgery to remove such internal heart tumours having
operated on over 40 children with similar conditions from all over the
world. Having secured private funding
for the operation, mum and dad travelled with Arthur last summer where his
tumour was largely removed thanks to the brilliance of Dr Pedro Del Nido to
whom they are also greatly indebted.
During the 6-hour open heart surgery he also removed Arthur’s
defibrillator which was no longer required.
Throughout this
turbulent period, the Naval Children’s Charity were incredibly supportive and
re-assuring. Dad had always been vaguely
aware of their existence but never expected that he would ever need their
assistance. The Charity took a keen interest in Arthur’s case and their
individual Caseworker, Sara Smith, was in regular contact with them without
ever being invasive. Looking back, it
was of huge comfort to both parents that they had an organisation such as the
Naval Children’s Charity in their corner.
Financially, the
Charity generously offered to cover their flight and accommodation costs. They were and remain incredibly thankful.
A further act of
generosity was the unexpected arrival of Christmas presents last December for
both Arthur and his older brother. They were both delighted by the delivery and
it has also had the effect of increasing their eldest son’s desire to one day
join the Royal Navy.
Arthur now attends
nursery 2 days a week and has been given the all clear with regards to his
heart such that he is no longer on any form of medication.
Regrettably, his
brain injury remains, and it is still unclear if he will ever walk or talk but they
remain hopeful given the progress they have seen since the original bleak
prognosis. What is without doubt however
is his unshakable thirst for life and the joy he brings to the family with his
smile and happy demeanour.
