Published as part of our communication in Neonatal Care Week | 23rd February – 1st March 2015.
To the well-meaning health care professional (of which I am one)… No more leaflets, please!
I’m numb. I’m in shock. I have so many questions, yet no words to express myself.
“Why did this happen?” | “Will they live?” | “Will they die” | “Why did this happen to us?”
A doctor is speaking to me across the incubator – did they really just say my baby won’t be home until his due date?
That’s 10 weeks away!
What do we do now? – Where do we go? – What do we say? – 10 weeks?!
“Don’t worry, you’re baby is doing fine” the doctors told me. “He’s a good weight for the 30 weeks; he’ll take the usual route”.
The usual route? I remember thinking what a strange phrase that was. There was nothing ‘usual’ about this situation, nothing at all.
Doing just fine? I believed them when they said my baby was going be okay. I had to, and I had to push dark thoughts from my mind; but seeing my tiny baby on a ventilator, lines in his arms, hands and feet and his chest mechanically rising and falling… he was far from fine.
I was far from fine.
My baby should be with me, his mother. I should be able to protect him from the lines and the needles, the glare of the lights and the invasive tubes.
I should be able to keep him safe, safely inside me, where he belonged. And for me, he would fill a space where I had been left empty.
Just statistics, numbers and scenarios.
The leaflets did not fill the empty space inside of me, nor did they dull the ache on my chest where my baby should have laid his head.
They did not answer the question I longed to answer – why me? Nor did they reassure me that the feelings of loss, jealousy, guilt and anger I felt where quite normal.
For this, communication on a one-to-one basis is needed. An opportunity to speak openly and honestly, to explore unanswered questions and concerns. A time to talk about the immediate and as well as future concerns and a space to express my thoughts, even if I didn’t know quite what I wanted to ask.
Written information does have its place though, like everything, but leaflets can never be a substitute to one-to-one communication and must be given in a timely and sensitive manner. They are not sticking plasters for example; they can not fix what has happened, can not change the past, nor can they predict the future. Nothing about NICU is normal; and no amount of literature can make the NICU experience ‘normal’. Your baby, your journey together – that is your focus. It is a journey unique to you and can not be simplified to a statistic, number or scenario found on a page.
So, no more leaflets please! My baby may look like the pictures in the books and I may recognise some of the words – but at home, surrounded by those leaflets, that is where I can feel most alone.