Melinda’s Story

... by Alexander's mum

My twins, Riley and Alexander were born in January 2008. Alexander was diagnosed after birth with imperforate anus and tethered spinal cord (a mid-line fault). He was taken to the Royal Children's Hospital for an operation to bring his bowel to the surface. Alexander had 2 stomas (active and inactive bowel) on his stomach and needed a colostomy bag.

My husband Ryan and I had never heard of this condition before. The joy of the arrival of our twins was quickly eroded with uncertainty, lack of information and despair. I cried an ocean. Ryan and I joked during those first days of his life that we were saviours of the drought for all the tears we shed.

The first week being reunited with Alexander in the neo-natal at RCH was hard. We were barely able to cuddle him due to all the various tubes and monitors attached; the doctors were explaining the condition and the need to perform tests to determine its extent, and as soon as Ryan and I learnt to manage and care for Alexander's colostomy, he could come home. We were petrified of hurting him, especially as the bags stuck to an area with fresh wounds and the stitches were still visible. Our stoma therapy nurse, Sarah, guided us through changing the bags, passing on her tips and answering our questions. It was around this time that I realised that no-one was going to care for my infant son or do this job for me. I had to be strong and confident and take charge of his care. I spent more time with Alexander, and after learning and discussing his days.

As time passed, I became more confident in caring for Alexander's stomas. I would cut several colostomy bags at a time with a 'template' of Alexander's stoma. I made it through my first challenge at home in changing a bag on my own. I worked out strategies to keep the skin on Alexander's stomach from becoming excoriated using all the products available from RCH's Equipment Distribution Centre and chatting to Sarah.

Alexander's bowel was closed in November 2008 when he was 10 months old. I was sad and glad in the days after the operation. I had helped my son in a way I had never imagined I would need to. While I was glad to put it behind us, I couldn't believe how far I had come in caring for him. I had learnt so much. And while everyone said Alexander had been through so much, I felt he will never remember this period – I will.

I have become a stronger person and in not knowing what the future holds, perhaps I needed to be.

The above was presented at the "Who Cares For The Carers?" Panel Discussion as part of the Y.O.U. Inc Meeting held in conjunction with the ACSA Annual Conference (October 2010)

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