Looking back at our time in NICU - Kate's story

Kate's Story Hero

Kate had a premature baby almost two years ago. Here, she reflects on her feelings, and what it was like to have a premature baby.

It's almost two years since our tiny 3lb baby arrived so unexpectedly early. For me, as his mum, the stress and the guilt will not subside...and that is why I'm doing this. For Bliss - to help them help other preemie mums. The race is on Heath's second birthday - my aim is to try and raise awareness and, of course, money to help other preemie mums be supported a little better - with Bliss's help.

Sometimes it's easier to write down how you feel rather than to say it out loud to the people you love the most. This is how I feel about being a preemie mum...

Adam, I'm so sorry that I couldn't keep him safe and warm in my tummy...I'm sorry that when he came you couldn't hold him, just stare at him in a plastic box. I'm sorry that we couldn't bring him home until he was almost two months old - and that you never wet his head or celebrated becoming his daddy.

I know I'm not the only preemie mum in the world. But I swear sometimes I feel that way. I’ve been so frustrated at the lack of understanding about preemie’s from those who are meant to be a support (Health visitors mainly – a ‘knowledge gap’ our consultants calls it). It leaves you feeling scared and alone.

The guilt I feel is like a black cloak that I just can't shake off. Why did he come too soon and too small? Was it the glass of fizzy I had at that wedding? The tumble I took at netball early on? The cans of pop I had on the days I was shattered? The consultant says no but every day I ask myself, ‘what did I do wrong?’ And am I brave enough to do it again?

I feel sorry that often I found it easier to seek comfort in strangers - the nurse that did his jabs the week before his MRI results, she held me so tight as I shook with complete desperation. The long phone calls with the kind lady that ran the local cattery (a preemie mum too), the guy in Lister canteen who put his arm around me as I stood crying while my toast burnt - before I went to sit by my baby’s box for another 12 hours or so. I should have let my closest friends and family in.

I'm sorry that I'm not the care-free mum that I wanted to be but uptight and military especially about his diet. The guilt I feel over his weight means usually I cry when Heath won’t eat his dinner, and that I get cross when he has a snack 'without enough fat' or he doesn't finish his milk.

Mainly I'm sorry at the extreme strain that being a preemie mum has put on us. I hope I'm still the women you married, but I'm not sure.

The NHS does an unbelievable job at caring for preemie babies - ultimately keeping so many alive. But the on-going support for families is, as far I have experienced, non-existent.

We are so lucky that Heath is happy and well. However there are days when I struggle to feel happy and well - there's no one there to help with what happened and how to cope with the guilt.

Bliss have a presence in some hospitals, to support families but not all. This needs to change.

Please give what you can to make this happen. Thank you.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages