Lives lost waiting
Gorgeous little Oliver ran out of time on Tuesday 6 October 2009. He
fought hard for two years but sadly that life-saving call never came.
Our thoughts are with his family at this very difficult time.
This was Oliver's story (as told by his family whilst he was on the transplant waiting list).
was born in June 2000. He was born with posterior urethral valves and
severe gastro oesophageal reflux, and only 1 of his kidneys functioning.
I knew at my 20 week scan that there was going to be some problem with
his kidneys but nothing could have prepared us for the traumatic 8 years
he was about to suffer.
Posterior urethral valves are an
obstruction in the urethra, making Oliver unable to pass urine, this
problem then resulted in Grade 5 kidney reflux. All the problems Oliver
was suffering such as the reflux, making him vomit, and his only kidney
being polyuric meant he was getting severely dehydrated. This
combination of problems contributed to the deterioration of his
remaining kidney. He had many operations to try and correct these and to
try to stop Ollie vomiting and also increase the size of his bladder to
enable him to be catheterized.
After many more operations for
feeding tubes and catheters by the time Ollie was five it was evident
that he was going to require a kidney transplant. We were referred to
the Evelina Children’s Hospital from St Mary’s Hospital, Paddington as
they do not carry out children’s kidney transplants. The team at the
Evelina did everything in their power to keep his kidney functioning but
unfortunately his stomach and gut deteriorated so badly that they were
left with no other choice but to remove his only kidney. This left
Oliver without any kidneys, consequently he is now on haemodialysis,
which started at four days a week but had to be increased to six to keep
him stable. Oliver was listed for a transplant in March 2008 and has
now been waiting for 11 months.
Ollie has such complex medical
needs which he accepts with such bravery. Last year, after a six month
stay in hospital when his gastrostomy had to be removed because of
infection, his gut and bowel problems took over. It was an uphill battle
and the decision had to be made to stop feeding Ollie and he was
started on TPN – total parenteral nutrition. This is an intravenous feed
given through a Hickman line placed through one of the large neck veins
straight to the heart.
So this is Oliver’s life at the moment,
he has to be at the Evelina on dialysis every day, except Sundays, he is
on TPN twenty four hours a day without any breaks. This means that when
he goes out, to the park etc., he has to carry a heavy backpack with
his pumps in it. He is on twenty medications a day, one of which he has
to have two hourly, day and night to keep his blood sugars stable.
Oliver, of course, cannot go to school and receives all his education at
the hospital. As you can imagine, after reading this, our lives have
not been easy. Ollie is such a wonderful boy, he accepts every new
procedure with fortitude and bravery, which we can only wonder at. He is
a delight and an inspiration to us all. He desperately needs, and
deserves, a kidney transplant to give him a better quality of life.