Tag Archives: #matexp

#FlamingJune – Taking Action for NICU Mums

One year ago a group of inspiring women pushed me into action. The women are those behind the MatExp campaign, a grassroots campaign, based in the Whose Shoes?® model, seeking to identify and share best practice across the nation’s maternity services.

cropped-Maternity-Experience

Last summer we were asked to take action, to seek to make change, as part of their #FlamingJune initiative to improve the maternity experience. I’d already been campaigning hard as part of The Smallest Things to raise awareness of premature birth and the journey faced by parents during and beyond neonatal care, but now was the time to take real action!

In #FlamingJune 2015 I began a change.org petition, calling upon the government to extend maternity leave for mothers of premature babies.

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The campaign has been debated on Radio 5 live, raised in Parliament during a Westminster Hall debate, featured in the national press and is supported by cross party MPs!  Right now the petition has just under 17,000 signatures – how amazing would it be to reach 20,000 before the end of June 2016?!

radio 5 live reception

This year 2016 may have felt more like wet June rather than #FlamingJune, but the fire to take action and make change still burns.

When my first son was born ten weeks early, I had no idea that maternity leave would begin the very next day, months before we would bring him home. Born too soon, the reality of life in neonatal care is very different from what a mother would usually expect from the early days of maternity leave. Lines, monitors, life support machines and recovery from what is often a traumatic birth. Mothers wait days, if not weeks to hold their babies for the first time and face the agonising journey home without their baby each day. The very real cost of premature birth is not only measured in terms of financial pressures placed on families, most recent studies suggest in excess of £2,000 for an average NICU stay, but also upon the long term health implications for the mother, her ability to return to work and her babies development. Extending statutory maternity leave and pay would give mothers the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development. We call on the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.

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PETITION: Keep signing! – Extend maternity leave for mothers of premature babies

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Top 10 of 2015!

top tenA huge thank you to everyone who has written, contributed, shared and read; each and everyone helping us to raise awareness in 2015!

So, here goes…. Our Top Ten most read posts of the last 12 months!

At 10. Our Story “In those first few days I was lost and empty; the emotional impact of leaving hospital without a baby in your arms is hard to describe…..” 

9. Starting School a year too soon “He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon. He’s ready and he’s not ready.”

8. 30ml Mum  “Everything revolved around expressing. Was I doing something wrong? Why couldn’t I produce more? Other mums would enter the expressing room and fill bottle after bottle – I couldn’t even get half way.”

7. Too soon, Too early: This Family needs more time  “I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.”

6. Extend Maternity Leave for mothers of premature babies “…more than a quarter of my maternity leave was spent visiting my baby in hospital and according to Bliss, like me, 60 per cent of mothers felt their maternity leave was too short.”

5. Eva & Charlotte’s Story “While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines.”

4. Shock, Trauma & Hope: A life changing journey through neonatal care “…This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed.”

3. Top Ten! | What not to say “At least you got to miss that really big stage”.

2. Longer mat leave for preemie mums: 5 Reasons Why “Mothers of babies born too soon face the agonising journey of leaving hospital without their baby day after day. Any NICU mum will tell you, there is a lot of watching and waiting in neonatal care – waiting for that first precious hold, usually days, sometimes weeks after their baby is born.”

smallest things

and finally, our most read post of 2015….

  1. Time to Talk: PTSD the hidden cost of NICU “Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.”

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guest blogIf you’d like to write for The Smallest Things or share your story in 2016, then get in touch! Just email Catriona or send in your story (approx. 650 words) to smallestthings@yahoo.com

 

Notice! It’s not quite the end of 2015, and our Top Ten is subject to change as we near the New Year…Check back on midday 31st December 2015 for our final count down!

No more leaflets, please!

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!

seeing our son for the first time

seeing our son for the first time

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.

NICU day 3 | Lines & Wires

NICU day 3 | Lines & Wires

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.

Too many Leaflets!

Too many Leaflets!

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.