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,due to "baby not 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 for us 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 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
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 nurse in Intensive Care just in case our little babe didn't
pull through (they told us the next 24 hours were 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 the fact that very little food
was being absorbed via his gut…his feed either erupted up or blasted
We were informed by his
consultant that we were facing not only the prospect of a
small bowel transplant but now a liver transplant too.
to theatre (we lost count there were so many)
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 was put on the transplant list. They had only ever done a
handful of these transplants in the UK...very scary, very
daunting...only for us 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 further corrective heart
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 little son
home with all his pumps and medical equipment and when we finally
got to take our baby boy home for the
1st time in his little life he was 13 mths old in September 1997, he
weighed that of a new born, just 11lb.
We needed to be trained medically for about 3 weeks to cope with all Aaron’s needs!
He was to all involved... sent home to die!
Aaron aged 3 months 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 in 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 and it 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 giving him his TPN, which was keeping
him alive nutritionally.
He was immediately listed for transplant and the rest was a waiting
game which we were very accustomed to.
jaundiced with liver disease, with
his little 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", I don't think anything in this
world can ever 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 another life threatening
The transport down was a light aircraft ambulance, there was lightning
in the sky, it was freaky to say the least, and a crewmember told me
not to worry if lightning hit the plane we’d be alright… AAAH!
Fortunately when we arrived at the hospital the organs gifted were a
match albeit the donor child was aged 10yrs and Aaron was only 3 yrs
meaning his liver needed to be reduced to fit, he was in theatre for about 12 hours, when we saw
him the next morning we immediately noticed his colour changed back to
a healthy pinkish tone his yellow jaundice
Vey quickly he began to eat food properly, something we had never
thought our son would ever do, he became IV free just 2 weeks
post-transplant breaking the time record for this step, at that time.
3yrs - 2 weeks post transplant
A year post transplant Aaron
developed a cancer related disorder, a b-cell lymphoma of his
duodenum, triggered by EBV (Epstein Barr virus) and the
immunosuppression medication he needed, called PTLD (Post transplant
lymphoproliferative disorder) which was successfully treated with
MabThera (Monoclonal antibody therapy)
Aaron is now 16yrs old, 12yrs post transplant this year, he is
leading a wonderful “normal” life, he can eat for Scotland. Though
his medical history has left him with learning difficulties he is
doing really well at school. He's taken part in The British
Transplant Games for 9yrs in a row and won a few medals. He enjoys
playing the drums, he plays football for a local team, mountain
bikes locally and has been snowboarding in the Swiss Alps (on
his own) to TACKERS (Transplant Adventure Camp for Kids) on several
He is such a typical teen 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
before his 16th birthday.
Aaron has his chance in life
thanks to that most precious of all gifts the "Gift of Life" thanks
to Aaron’s donor & his 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
May 2010 was Aaron's 10th Transplant Anniversary
We wished to mark such a special occasion, we have never felt comfortable
celebrating as it was also 10yrs ago since another family lost their
little son, our son's donor. So we are made a small
The Donor Family Network Gift of Life Memorial Appeal