Macie Isabelle Leckey’s Story

My Daughter’s Story – our little fighter

I hope this helps other parents!

Hello, my name is Macie Isabelle Leckey, I was born at 28+2 weeks on 12th December 2011 at 11.06am weighing 1.195kg (2 pound 10 ounces). I was taken straight to the Special Care Baby Unit and put onto CPAP. For the first two weeks of my life I was feeding well with my mammy’s milk.

Then, on 27th December, I became unwell. I started vomiting, my tummy swelled, I had diarrhoea which had blood in it and I had a temperature. The nurses and doctors kept a very close eye on me but things got really bad and I had to have help with my breathing so I was put on to a ventilator.  The next morning I had an X-ray which confirmed I had an infection called Necrotizing Enterocolitis (NEC).  Necrotizing Enterocolitis occurs when the lining of the intestinal wall dies and the tissue falls off, the cause for this disorder is unknown, although bacteria in the intestine may also be a cause.  The X-ray showed that there was a hole in my bowel which meant I needed surgery to remove the dead bowel and have a stoma brought up.

My case was bad resulting in most of my small bowel having to be removed only leaving me with 10cm.  When I was brought back from theatre my Mammy and Daddy were prepared for the worst outcome. Over the next 2 weeks I started to improve, but then I developed a Fistula with bowel contents leaking out, which meant another hole in the bowel. I was taken back to theatre where this was stitched and another stoma was brought up, my family was again prepared for the worst. After this surgery I became stronger and started to breathe for myself so the ventilator was removed.  In time I had my eyes lasered as I developed Retinopathy of prematurity (ROP) and had an operation to have a long line put in my arm.

I was moved around to the Blue area for a while before it was time to go back to theatre to have my stoma reversed.  There was more bad news after my surgery, there was little holes where my bowel had been stuck down.  So for a third time my family were prepared again! I developed Liver Disease due to being on TPN since day 1 with my Bilirubin level being really high.  I did have a few more problems where my tummy swelled, so a abdomen drain was put in and I had trouble getting off the ventilator, then when I was breathing by myself I stopped breathing 3 days in a row, but this was my time to start getting better!

I was soon moved around to the Blue area again and after 4 months in SCBU I was transferred down to Ward 1. I spent the next 3 months of my life down on Ward 1 where my milk was built up and hours off my TPN increased which helped my Bilirubin level start decreasing.

In time, I started on solids and got to the time where I was allowed to go home! I am still on TPN at night but apart from that I do everything else like any other baby.  My Bilirubin level is now normal and I am continuing to put on weight.

If it wasn’t for all the staff on both SCBU and ward 1 I would not be here, they do amazing jobs!

I hope my story is helpful to others, and to help see there is a light at the end of the tunnel!
love Macie, Joanne and Ian x