the story of my son Aaron an inspiration to us all...
You never think for a moment that
your unborn child you've carried around as part of you for all those
months whilst pregnant could be anything other than perfect.
Born in Scotland, induced 3 weeks pre term as "baby wasn't growing" and
delivered via an emergency
c-section in August 1996 it was discovered our new born baby boy had
a heart murmur, which was not too worrying as my nephew has a hole in
He was transferred to our local children’s hospital in Edinburgh
where they found out just how bad things were, he had a congenital
heart disorder (CHD) called Tetralogy of Fallots (4 defects) and required immediate
I was transferred to a
maternity hospital elsewhere in the city, it was such a traumatic
experience to be separated from my new born baby.
So at a ripe wee age of 6 days
old our baby boy, now named Aaron, underwent his 1st of many
As a direct consequence of his surgery combined with his low birth weight he
developed something called NEC (Necrosising
Enteral Colitus) which destroyed 3/4 of his small intestine
leaving him with practically no absorption.
He was put on artificial
feeding via a gastrostomy and an IV line into his chest giving him
TPN (Total Parental Nutrition)
taken by a nurse in Intensive Care just in case our little babe didn't
pull through, it was a case of "next 24hrs are critical"
Aaron remained in hospital, it
took its toll on us, travelling up and down from the hospital, but
we thought, ”hey this TPN is the best thing since sliced bread.”
But it wasn’t for Aaron , at 8 mths old his liver was so damaged
with a liver disease called cholestasis due to this wonderous TPN
being toxic to his liver and of course the little amount of food
being absorbed via his gut…his feed either erupted up or blasted
We were informed that we were facing not only the prospect of a
small bowel transplant but now a liver transplant too!.
to theatre! (so many we lost count)
Aaron’s 1st transplant assessment
was down in Birmingham Children’s Hospital in the Spring of 1997
where it was agreed by all that Aaron most definitely required both
organs and he was put on the transplant list! They had only ever
done a handful of these transplants in the UK. Very scary, very
Only to be informed 1 week later that he couldn’t remain on the list
as he wouldn’t have withstood the transplant surgery his heart was
too weak and required more corrective surgery…we were devastated.
To be” fit and well” enough for this necessary surgery was something
Aaron was never going to be… Or so we thought.
We fought to get our son home with all his pumps and medical
equipment and when we finally got to take my baby son home for the
1st time in his life he was 13 mths old, which was in September 1997.
We needed to be trained medically to cope with all Aaron’s
He was to all involved... sent home to die.
Aaron aged 3
Aaron's 1st birthday
I was crazy enough to have fallen
pregnant during this living nightmare of ours and Aaron’s baby
brother Jamie was born January 1998 but he became a wonderful breath
of life and a positive distraction in our home he became a source of
love and fun for Aaron.
We tried to encourage Aaron to eat but because he never had nor for
that matter ever had the need or urge to eat food we were so excited
when he’d have a teaspoon of tomato soup.
The liver is an amazing organ and has the ability to repair itself
and due to Aaron’s home life that’s exactly what it did, his
jaundice went, he was the most healthiest he’d ever been and best of
all he was starting to gain weight, he’d defied all the odds stacked
In the Summer of 1999 the doctors finally agreed that Aaron was fit
and well enough to undergo his open heart surgery which was
performed at Birmingham. All went smoothly until like always seemed
to happen to him, Aaron got a post op infection, a particularly nasty
fungal one and he became very poorly. His jaundice returned his
liver became very diseased once again.
The 2nd transplant assessment took place January 2000 and Aaron was
an urgent case due to the lack of venous access, most of his veins
were "shot" meaning there was no access left for the IV line for his TPN,
him alive nutritionally.
He was immediately put on the organ transplant list and the rest was a waiting game
but we were becoming very accustomed to that!
Aaron very jaundiced with liver disease,
with his brother Jamie.
On Sunday 29th May at 6 p.m.
having literally just sat down to a Thai green curry and a glass of
chilled Chardonnay... we got "the call" nothing in this world can
ever truly prepare you for it....
We remained calm and got my sister to come and collect Jamie, we
picked up our ready packed bag and went to collect Aaron who was in
hospital, having just recovered from yet anopther of the countless
line infections he was susceptible to.
The aeroplane was a light aircraft ambulance,there was lightning in
the sky, it was freaky to say the least, a crewmember told me
not to worry if lightning hit the plane we’d still be all right… AAAH!
Fortunately when we arrived we found out the organs gifted were a match,
albeit the donor child was aged 10yrs and Aaron was only 3 yrs
therefore his liver needed to be cut- down to size, he was in
theatre for about 12 hours. When we got to see him what struck us
was his skin colour had transformed to a healthy pinkish colour the yellow jaundice
He quickly began to eat properly, as soon as he was able, something we never
thought our son would ever do, he became IV free just 2 weeks
post-transplant breaking the time record at that time!
3yrs - 2 weeks post transplant
A year post transplant he
developed a cancer related disorder,a b-cell lymphoma of his
duodenum, triggered by EBV (Epstein Barr virus) and the
immunosuppression medication he needs, called PTLD (Post transplant lymphoproliferative disorder)
which was successfully treated with MabThera. (Monoclonal Antibody
Aaron is now 14yrs old, 8yrs post transplant, he is leading a
wonderful “normal” life, he can eat for Scotland, he’s doing well at
school, just started High School,he's taken part in The British
Transplant Games and won 2 silver and 2 bronze medals, he mountain
bikes locally and has been snowboarding in the Swiss Alps (on
his own!) to TACKERS(Transplant Adventure Camp for Kids)
He is such a typical wee lad
and has such a strong out going personality, without which I’m sure
he wouldn’t have made it through these past years, he is such a wee
battler and even ‘tho’ he can drive us demented at times he is
forever an inspiration to us all ....
snowboarding in Swiss Alps @ TACKERS 07
Aaron has his chance in life
thanks to that most precious of all gifts the "Gift of Life" thanks
to Aaron’s donor family, without their generous and selfless act
upon the tragic untimely death of their son…. Aaron would not be
here with us today to enjoy this wondrous world of beauty and