It’s only now, looking back at those first couple of years with M, that I can so clearly see that all the signs pointed to something being wrong. BUT, as with all young parents, we took the rough with the smooth and just assumed that it was part and parcel of the development process, especially with a premature baby. Hindsight is a wonderful thing, but only because it is exactly that.

In the months following his traumatic arrival into our lives, M suffered with chest infections, high temperatures, reflux, high-pitched screams, poor sleep patterns and what I now realise was almost constant diarrhoea. He was prescribed an infant inhaler, seemed to bounce from one course of antibiotics to the next, gulped back infant Gaviscon with every meal and, despite his epic size and weight at birth, stayed at the petite end of the scale. He dropped from the 95th percentile at birth down to the 9th percentile, but everyone assured me that he was healthy and thriving – one doctor even suggested that his weight had been recorded incorrectly at birth and that his massive weight loss and subsequent low weight gain was nothing to be concerned about.

Comparisons between M and G also seemed irrelevant – G was your typical first-born girl. Bright, articulate and not exclusively breast-fed, unlike M who successfully breast-fed for the first 7 months. The health professionals suggested that the differences in weight, appetite and nappies were because he was breast-fed and as M seemed to be a relatively happy baby, I had no reason to question any of the theories behind his small size and constant battles with illness.

It was purely a chance comment by our nanny when M was around 15 months that triggered a realisation that perhaps something was wrong. She had been chatting whilst out at a local toddler group with M in tow, when another mother commented on how many times she had to change M’s dirty nappy. It wasn’t a complete surprise to us when she mentioned that perhaps the 8-10 dirty nappy changes a day in my 15-month old wasn’t “normal” as I had raised a similar concern with our health visitor when M was 8 months old, but it did make me stop and think.

I went back to the local health centre and voiced once again my concerns that 8 dirty nappies a day wasn’t typical and was told to keep an eye on it and to come back in a couple of months and see the GP if I was still concerned. M appeared to be thriving and was growing along his percentile line, so they weren’t as worried as me and I now suspect that this is this time when I first got labelled as a fussy Mum!

Little did I know then, but 7 years on, we now know that I wasn’t just a paranoid or fussy Mum, but rather that there was a genuine medical problem behind our concerns and that really our battle was only just beginning.