Aaron's Life Journey...so far...

This is 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 his heart.

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 surgery.

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 surgeries.

As a direct consequence of his surgery combined with his low birth weight Aaron 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)

Polaroid 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 out.

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.

Another trip 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 against him!

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.

Aaron very 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 line infection.
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 had gone!
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.

Aaron aged 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 occasions.

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 ....

Aaron snowboarding in Swiss Alps @ TACKERS 07

Aaron just 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 adventure…

Catriona  (Aaron's proud mum)

The 30th 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 donation to The Donor Family Network Gift of Life Memorial Appeal