Aaron’s 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 and 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 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 heart condition called Tetralogy of Fallots 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 surgery!

As a direct consequence of his surgery and 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)

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 out! We were informed that we were facing not only the prospect of a small bowel transplant but now a liver transplant too!

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 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 he was 13 mths old, which was in September 1997.

We needed to be trained medically 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 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 or for that matter ever had the need or urge 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 down 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 was taking a pounding!

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 no access for the IV line for his TPN, that kept him alive nutritionally.

He was put on the transplant list and the rest was a waiting game but we were very accustomed to that!

Aaron with his little brother Jamie very jaundiced with liver disease.

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 that call….

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, but recovered.

The aeroplane was a little ambulance type and there was lightening in the sky, it was freaky to say the least, and a crewmember told me not to worry if lightening hit the plane we’d still be all right… AAAH!

Fortunately 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, and so Aaron got his new liver and small bowel.

Immediately his colour changed back to pinkish the yellow jaundice gone!

He began to eat properly as soon as he was able, something we never thought our son would ever do, and he became IV free just 2 weeks post-transplant breaking the time record at that time!

Aaron aged 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,

Aaron is now 12yrs 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 ….

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 adventure…

Aaron snowboarding in Swiss Alps @ TACKERS 07

Written by Cat
Transplant Kids
February 2010

You can view more about Transplant Kids via this link
Given permission by Cat to use Aaron’s story Transplants Kids http://www.transplantkids.co.uk/stories-Aaron.html
Cat has given CHD-UK permission to use the photographs on this page