Catriona Hamilton

Her Story

Aaron is my 5yr. old son, he lives here in Scotland with his little bruv Jamie aged 4yrs, his daddy and me, Catriona, his mum. Aaron’s eventual need for his liver and small bowel transplants were an accumulation of various things…

He was born with a congenital heart disorder and had his 1st heart op. At 6 days old which resulted in him getting NEC (necrosising entercolitus) which destroyed ¾ of his small bowel and subsequently needed to be IV fed with TPN (total parental nutrition) via a central line (Hickman) and also he required enteral feed via a gastrostomy (“Mickey” button).

The TPN was toxic to his liver and eventually caused cholestasis of the liver, he became very jaundiced and went for his 1st transplant assessment at 8 months old but it became apparent that as much as Aaron needed the liver and small bowel transplants he wasn’t fit enough to undergo the op.,he required further heart surgery before he could be put on the list!

It was a long hard wait until Aaron was fit and well enough to get his open heart op but once his heart was sorted he was able to go on the transplant list which fortunately for us was not a long wait, only 4 months! The donor child was aged 10 yrs, the liver had to be cut down to size, the organs were also CMV positive, but we were desperate as Aaron’s veins were shot and we were rapidly loosing venous access for his TPN!

Aaron received his transplants in May 2000, aged 3yrs, there was a miraculous change to his life, his colour went from yellow to pink, he was able to eat for the 1st time and was free of IV lines and attachment to pumps, he was free! He’s experienced rejection and infection but most worrying has been his development of PTLD (Post transplant lympho proliferative disorder) a form of B-cell lymphoma, in his duodenum. He’s been successfully treated for this but remains high risk, due to his immunosuppression. Due to this he still has his ileostomy (his bowel has been reconnected but the stoma allows easy access to his duodenum for biopsies and scopes!) He’s still got his gastrostomy but not for feed but for most of his 15 meds as many only come in pill/tablet form, which he can’t swallow or they simply taste downright horrid!

We are in contact with Aaron’s donor family and often send pics of main events in his life. Aaron’s donor was killed by a hit and run accident and his family finds great happiness in the knowledge that, although they could never know what their son/brother may have achieved/accomplished in his life, they know that even in their sad loss he’s given a future to my son (as well as others).