Category Archives: News

Medway NHS Trust becomes first hospital to extend leave for staff who have a premature baby

Medway NHS Foundation Trust has become the first in England to sign up to The Smallest Things ‘Employer with Heart’ Charter, pledging its commitment to support the needs of premature babies and their families.

Current NHS terms and conditions afford new mums whose baby has been born prematurely to split their maternity leave, allowing them to take two weeks leave immediately after childbirth, and the rest following their baby’s discharge from hospital.

One in eight babies are born prematurely and subsequently parents have a reduced time to bond with their baby with the period from birth, to discharge for babies born prematurely typically being several weeks, or even months.  The Trust has therefore taken the step to support new mums in this intervening period by committing to ensure they receive their normal pay up until the point that their normal maternity pay commences.

James Devine, Deputy Chief Executive and Executive Director of Human Resources and Organisational Development said: “We are proud to have become the first NHS Trust in the country to sign up to the Employer with Heart Charter.

“Our staff work tirelessly every day to look after our patients and we want to ensure that they also receive the support that they need when they have difficulty in their own personal lives.  We know that this will affect only a small number of our staff each year, but it is so important that we care for those who are caring for others.

“We understand that it can be an extremely difficult and worrying time for those who experience premature labour and the last thing we want is for our hardworking staff to feel they have to worry about work or whether they can afford to take time off to be with their baby”

Catriona Ogilvy, founder of The Smallest Things, said: “We are delighted that Medway NHS Foundation Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.”

Find out more about the charter, information for employers and employees here – The Smallest Things Employer with Heart Charter

More than 219,000 people have signed the change.org petition calling upon Government to ensure that all families have the extra time they need following premature birth

For all enquires please contact e. smallestthings@yahoo.com

Paloma Faith and Sony Music UK support employees who give birth prematurely

NEWS!!!

Sony Music UK becomes the first media company to sign up to The Smallest Things “Employers with Heart” Charter, giving paid extended leave to both mothers and fathers of babies born too soon, as well as providing psychological support on return to work.

Welcoming the news, Smallest Things Founder Catriona Ogilvy said, “We are delighted that Sony Music UK has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave.” She went on to say, “bringing your baby home can be difficult too, as often there are ongoing medical issues and concerns about development and immunity. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.” 

Speaking today Paloma Faith praised the steps taken by her record label to support parents during these difficult times, stating “in that moment everything else takes a back seat and it’s wonderful that Sony Music are acknowledging that by introducing this.”

Jason Iley, Chairman and CEO, Sony Music UK & Ireland added “we always strive to be understanding and compassionate towards our employees. We appreciate that it can be an extremely difficult and worrying time for those who experience premature labour and family is of the upmost importance.”

So far, more than 200,000 people have signed a change.org petitioncalling upon government to extend leave for parents of premature babies. After meeting with The Smallest Things last year, business minister Margot James MP took up the issue announcing in the Governments Mothers Day Pledge that “mothers of premature babies should receive full backing from employers” and bringing forward new ACAS guidelines went on to say I am confident businesses will welcome these new guidelines and act on our advice, but I will of course keep progress under review, and do not rule out legislating in the future if our advice is not heeded”. 

The commitment made today by Sony Music UK will make a real difference in the lives of families who experience the trauma of premature birth and will give tiny babies the time they need to grow, develop and to bond with their parents after weeks and often months in hospital.

For all enquires or more information about the Not Mat Leave Campaign or Employers with Heart Charter, please contact Catriona Ogilvy at smallestthings@yahoo.com

My Employer is Giving Premature Baby Mums More Time: Will Yours?

Mum to identical twins and Tamba volunteer, Linsey Wynton, on how her employer, Waltham Forest Council, has introduced extended maternity leave to parents of premature babies.

Five years ago when I gave birth to identical twins, 11 weeks early, I had no idea I would be involved in publicising a campaign to bring about fairer pay for parents in similar circumstances.

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Linsey shares skin-skin time with her twin boys in neonatal intensive care

Fast forward to 2018 and I am in Broadcasting House, with the Deputy Leader of the council I work for as a press officer in Waltham Forest. He’s Councillor Clyde Loakes and he is about to announce a trailblazing change on BBC Woman’s Hour.

Our council is – we believe – the first employer in the country to offer extended maternity and paternity leave to parents of premature babies for the duration of time they spend in hospital up until their original due date.

“It’s a small thing we can do that will make a huge difference for families. I don’t understand why more employers don’t do this,” Cllr Loakes has told me. And he explains to Woman’s Hour presenter Jane Garvey: “We can wait till the cows come home for Parliament to legislate. But this is something we can do now.”

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Linsey Wynton, Sarah Miles and Cllr Loakes at the BBC promoting Waltham Forest Council’s new initiative

We were joined by campaigner Sarah Miles, a trustee of The Smallest Things Charity, which wants the law to be changed so employers are required to offer extended paid maternity and paternity leave to all parents of premature babies. A petition by The Smallest Things calling for this has secured over 1850,000 signatures so far.

Sarah’s story moved me to tears. Six years ago she gave birth to twin girls 12 weeks prematurely. But she had no idea that her maternity leave from work would start the very next day.

One of Sarah’s twins, Charlotte, spent three months in hospital. Her other twin, Eva, was in hospital for six months and sadly passed away.

Sarah’s maternity leave was so different from what most new mums expect – months spent visiting a neonatal unit, listening to the constant beeping monitors, willing her girls to pull through and come home. She went through so many ups and downs, meeting parents along the way whose babies eventually thrived and others whose babies tragically died.

Soon after baby Eva’s death, Sarah was asked by her employers at the time if she would be returning to work. Because of her recent bereavement, and still having a very tiny baby at home, Sarah requested unpaid leave.

“I was not ready to go back to work. 40% of mothers of premature babies experience postnatal depression, and a report by The Smallest Things last year revealed 63% of mums of premature babies experience anxiety and 44% have flashbacks. I was suffering from all of these,” explained Sarah, who is now also a Tamba volunteer with the Bereavement Support Group.

Her employer was not sympathetic. In the end, Sarah had no choice but to resign from her job. She joined forces with other mums who had had premature babies, including Smallest Things Founder Catriona Ogilvy, whose first son Samuel was born 10 weeks early.

Catriona’s local MP Steve Reed introduced a Prematurity Bill to parliament, which called on government to extend paid maternity and paternity pay to parents of premature babies. Unfortunately it was dropped at the second reading. However, following a meeting with The Smallest Things, Bliss and Steve Reed, Business Minister Margot James MP requested guidelines be drawn up on how employers can best support parents of premature babies. The ACAS guidelines were published in March 2017 and was the first time the unique needs of families of premature babies have been acknowledged in employer guidance.

However, changes need to be made not just by employers, but in terms of statutory maternity allowance given that one in seven people in Britain is self-employed.

When my twin babies were born 11 weeks I was self-employed and so was my husband. So I was I was only entitled to 9 months statutory maternity allowance. At that time it was only £135 a week. And because I had been very unwell, with a diagnosis of acute and severe Twin to Twin Transfusion at 24 weeks of pregnancy, my payments ran out by the time my twins were six-months-old. With an older son also, and the lack of subsidised childcare, it was not viable for me to work until my twins were three. So as well as the sheer exhaustion, it was tough financially.

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Linsey was not able to return to work until her twins were 3 years old

All I can hope is this small change that my employer has made will be the start of something much bigger for other parents in my situation in future. Cllr Loakes is now talking to the council’s contractors, which include Kier, who provide our refuse service, and partners, which include Whipps Cross Hospital. He wants them to make a voluntary change to support new parents of babies born prematurely.

Our story has had a lot of coverage, including an article in the Evening Standard, an item on BBC Radio London and TV coverage on BBC London and ITV London News. Hopefully it will be the first of many victories for The Smallest Things.

 

If like Linsey you’d like to ask your employer to extend parental leave for parents affected by premature birth, download our letter for employees and ask them to become a Smallest Things Employer with Heart by signing up to our Charter of Best Practice. 

New Report on Life After Neonatal Care

Today The Smallest Things published their 2017 ‘Life After Neonatal Care Report. Read the full Life After NICU Report 2017 here and see below for the executive summary.

EXECUTIVE SUMMARY

The Smallest Things Life after Neonatal Care Report shares the findings of more than 1,600 mothers and is thought to be the largest survey of the needs of children and parents following premature birth in the UK. The report, which includes first-hand accounts from parents, demonstrates the complex nature and often interlinking difficulties families face following premature birth. From maternal mental health, family life, ongoing medical needs, re-admission to hospital and special educational needs, the results clearly outline a lasting journey through which parents struggle to find support.

 

Maternal Mental Health

  • 63% of mothers report experiencing anxiety following discharge from neonatal care
  • One third of mothers reported feeling isolated following neonatal care.
  • 44% of mothers had flashbacks to their time in neonatal care.
  • 61% of mothers reported feelings of guilt following premature birth.
  • 26% felt that their health visitor understood theirs or their baby’s needs

Ongoing Medical Needs

  • 48% of premature babies were re-admitted to hospital following discharge home from neonatal care.
  • 46% of children have ongoing medical difficulties following premature birth.
  • More than half of parents worried about the long-term outcomes for their child.

 Family Life

  • Only 35% of mums were able to attend mum and baby groups.
  • Nearly half (49%) reported that having a premature baby affected their financial circumstances.
  • 1 in 3 struggled to keep up with social friendships following neonatal care.
  • 14% of mothers were unable to return to work as a result of their child’s health needs.

Special Educational Needs

  • 44% reported that their school age child had additional learning needs.
  • More than half of those had, or were applying for an Education, Health, Care Plan

Conclusions and Recommendations

The report concludes that there is an urgent need for continuity of care from hospital to home and that additional training must be made available to community practitioners in order to identify and support the specific needs of premature babies and their parents. A running theme throughout the report is the lack of awareness of the lasting journey of prematurity and the far reaching impact upon maternal mental health and family life.

Key recommendations include that all NICU parents must have access to timely and tailored psychological support, addressing the often complex mental health needs following discharge from neonatal care. In addition, parents should be encouraged to inform early years and primary school teaching staff of their child’s pre-term birth, supporting early identification of additional learning needs.

 

The Smallest Ever Nappy for The Smallest Things

Sponsored post

The Smallest Things introduces… the smallest nappy!

My baby was three days old when I first changed his nappy. He was tiny, a life-support machine helped him to breathe and lines and wires covered his body. I’d not yet held Samuel and as I placed my hands through the incubator portholes I was terrified! His legs were so small that I couldn’t feel any weight as I lifted them, manoeuvering them amid a host of tangled wires into a ‘micro’ nappy that swamped his fragile body.

This first extraordinary nappy change is a reality for thousands of parents of premature babies, and one of the reasons why The Smallest Things was delighted when Pampers asked us to help spread the word about the launch of their smallest nappy ever!

The Smallest Nappy for The Smallest Things, fits in the palm of your hand

Fitting in the palm of your hand, the Pampers Preemie Protection P3 nappy is three times smaller than a regular newborn nappy and designed to meet the needs of the tiniest babies in neonatal care. I remember longing to be able to ‘see’ my baby. Nearly every inch of him was covered; breathing tubes across his face, a mask to protect his eyes from the ultra violet lights, wires and lines over each limb… and his body, swamped in an over-sized nappy! We had to turn down the nappy at the top and even then it reached up to his armpits. Looking at it now it seems tiny and is a lasting reminder of just how small our little fighter was.

Precious moments

Pampers will be donating approximately 3 million nappies from its new Preemie Protection range to neonatal units across the county – this alone will make a huge difference to families journeying through neonatal care. Just the other day I was standing outside a baby shop, which at the time of my pre-term birth was the only place I could buy ‘micro’ nappies. I shuddered as I remember how hard it was, planning an extra trip out in between three-hourly expressing sessions, when all I wanted to do was be at the hospital. Instead I was standing at the tills with heavily pregnant women, grieving for the baby bump I should still have. As I watched families plan their nursery, choose their cots and first newborn clothes, I thought of my own interrupted planning and my empty moses basket at home. The nappies donated by Pampers will enable parents to spend more precious moments with their baby on the neonatal unit and take away the pain of queueing alongside ‘normal’ mums.

#PowerofBabies

Pampers has teamed up with our friends at Bliss to ask parents to share photos on social media of their little ones with their fists pumping to celebrate the amazing fighting spirit that premature babies show every day. For every picture shared using the hashtag #powerofbabies Pampers will donate £1 to Bliss – we can’t wait to see the internet filled with your little fighters!

Tell us what you think

The Smallest Things is a registered charity, promoting the good health of premature babies and their families. We’d love to hear about your first nappy change and what you think of the new Pampers Preemie Protection range – tell us in the comments below!

 

Pampers has donated the fee for this sponsored post to The Smallest Things charity.

 

 

 

Premature Babies Recognised in Parenting Blog Awards

What an exciting way to start 2017 – The Smallest Things is down to the final 8 in the UK Blogging Awards, recognised in the parenting category!


Alongside parenting blogs The Smallest Things stands out as being different, or as I like to say – unique! Parents of premature babies face very different challenges and their journey into parenthood could almost be described as extreme. 

My baby was eight weeks old when I  brought him home from hospital. I’d been a mother for two months and yet I’d struggled to become a mum to my tiny baby as he remained in neonatal intensive care. I waited 6 long days to be able to hold him for the first time and I was filled with fear. Lines and wires tangled around his limbs and his ventilator mask obscured his face. As I held him in my arms monitors flashed red and alarm bells rang – this was a very ‘unique’ introduction to parenting. 


Writing as part of The Smallest Things blog I have described a journey that does not end when you leave the NICU doors. The memories of neonatal intensive care do fade over time, but the needs of a baby born too soon often continue and the traumatic start to parenthood shapes who you are as a parent. 

This difficult start and the ongoing journey is one thousands of parents will embark on each year – and yet parenting after premature birth is seldom spoken about. 

The Smallest Things has been trying to change that, which is why it is so fantastic to see this website recognised alongside other parenting blogs in the 2017 Blogging Awards. 
Thank you to everyone who voted for the site and we look forward to celebrating with the other parenting finalists later in the year. 

115,218 Voices go to Parliament

This week Smallest Things supporters and volunteers handed in 115, 218 signatures to the Dept. for Business, Energy and Industrial Strategy. The petition is for the attention of Minister Margot James MP who, among many other things, is responsible for parental leave policy.

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Until now the minister has declined our requests to meet with parents affected by premature birth…but we now have a glimpse of hope that our 115,218 voices will be heard!

No dates have been offered yet, but an intention to arrange a time to meet with families has been made. Watch this Space….

Thank you to everyone who shared #NotMatLeave pictures of their time in NICU on Facebook and Twitter – together we can raise awareness and make change happen!

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If you haven’t signed the petition yet, the link is still open and can be signed here.

MPs back extended leave for parents of premature babies

Yesterday, Steve Reed MP introduced a bill to parliament, calling for extended parental leave for mothers and fathers of premature babies.

The bill, which has gained cross party support, is now scheduled to be debated on 16 December 2016.

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You can watch again, as Steve Reed MP introduces the #PrematurityBill here.

The campaign is beginning to get the publicity it needs!

Born too soon, mothers of premature babies spend weeks or months of their maternity leave visiting tiny and often critically ill babies in hospital. Steve said;

“Having a premature baby is one of the most traumatic experiences that any parent can go through. Instead of bringing home the healthy baby they had longed for, their tiny baby is put inside an incubator, fighting for its life, surrounded by tubes, wires and bleeping monitors. Instead of holding their baby close, these parents can only watch as their baby struggles to breathe, dependent on life support and intensive care.”

More than 110, 000 people have now signed the petition to extend leave for families of premature babies and the campaign has been receiving high profile media attention.

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Is change is possible?

YES, and the precedent has already been set. New Zealand currently offers extended leave, as well as other European countries such as Finland, Iceland and Croatia.

Will change happen?

YES!  With the support of the public and cross party parliamentary support for the bill, change can happen!

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Finalist! Mumsnet Best Campaigner Award

I am so proud that The Smallest Things has made it down to the final three, alongside Are You Kiddingney? and  Five Little Doves, in the blogging Mumsnet best campaigner awards.

And that is thanks to you.

Everyone who has followed the campaign to raise awareness of the premature birth and beyond and everyone who voted for my blog to reach the finals! It truly is humbling to think that people have voted for The Smallest Things, particularly when as a campaigner I was listed among so many other outstanding women. Thank you.

For The Smallest Things, a blog which has just celebrated is second birthday, to be considered for this award is a fantastic recognition of the campaign so far; raising awareness of life beyond the neonatal unit, highlighting the mental health needs of parents following premature birth and addressing the need to extend parental leave for mothers of babies born too soon.

Sharing our Stories

In recent weeks, The Smallest Things and in particular the petition to extend parental leave, has received local and national press coverage. The knock on affect, apart from of course the fantastic publicity for the campaign, has been that many mothers and fathers have got in touch to share their own stories. As a site, my own story was intended to shine a light on the hidden world of neonatal intensive care and its never ending journey; but it has become much more than that. I still remember the host of conflicting emotions that I felt after bringing my first son home from hospital. I was lost and displaying all the signs that I now know are totally normal for a NICU mum.

At one of my darkest times, I stumbled across another mums website –Not Even a Bag of Sugar. It gave me hope. I wasn’t alone. I wasn’t crazy… everything started to make a bit more sense.

A Finalist!

…and as for the Award – wow, how amazing would that be!?

But right now, even with 100,000 signatures and off to Parliament next week, if just one mum stumbles across The Smallest Things tonight and like me discovers that she is not alone, then I know I am making The Smallest Things matter.

Catriona x

 

What to do with 100,000 signatures….

….take them to Parliament of course!

 

Your voice and your story really can make a difference.

When I spoke to my local Member of Parliament Steve Reed MP last year, I invited him to visit his local neonatal unit where my second son Jack was born prematurely. He met with staff and parents on the unit and listened as I explained how my new Smallest Things campaign aimed to shine a light on the needs of families through neonatal intensive care and beyond.

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Steve Reed meets mum Rachel and baby boy Benjamin at Croydon University Hospital neonatal unit

Since then Steve Reed has gone on to host a Smallest Things event in Parliament, where mothers like Sarah Miles spoke movingly about their own experiences through NICU and of their need for longer maternity leave. He has spoken about the campaign in a Westminster Hall debate during World Prematurity month and has gained cross-party support as he now seeks to introduce a new Bill to Parliament.

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The Smallest Things World Prematurity Month Westminster Reception

On October 26th Steve Reed MP will introduce a Bill to the House of Commons proposing extended parental leave for families of premature babies!!! 

With over 100,000 signatures on our petition to extend maternity leave for mothers of permature babies Steve has a lot of support behind him; but he will also need the support of fellow MPs.

Your voice and your story really can make a difference.

Contact your own local MP now.

Share your story.

Ask them to support Steve’s Bill!

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You can find a draft letter you may like to use to contact your MP here – letter-to-my-local-mp

How to find my local MP – www.writetothem.com

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

BBC Women’s Hour – Speaking about the NICU Journey

I was delighted to be invited on to BBC Women’s Hour today to speak about my petition to extend maternity leave for mother of premature babies. The petition has reached an incredible 100,000 signatures!

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I was joined by Bliss CEO Caroline Davey and together we spoke about the needs of families following neonatal intensive care with radio presenter Jane Garvey; highlighting the impact of premature birth upon a mother’s mental health, her ability to return to work and a baby’s need for time to develop.

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I spoke about my sons, Samuel and Jack, now age 5 years and 3 years, who were both born premature. I spoke about our journey, which like so many others did not end at the NICU door. I described the isolation mothers can face once they leave the neonatal unit, the on-going worries and anxieties, re-admissions to hospital and the financial impact of an early birth. I spoke about the need for more time for mothers and their babies.

You can listen again to our BBC Women’s Hour piece here.

And, … If you like what you hear, why not share with others?

That way we continue to raise awareness, explaining the unique needs of families following premature and life beyond neonatal intensive care.

 

 

Mumsnet 2016 Best Campaigner Award – Shortlisted!

I am thrilled and so very proud to announce that The Smallest Things have been shortlisted for the Mumsnet 2016 Best Campaigner Award!

It was a wonderful and very unexpected surprise when I received the notification yesterday evening; and it is a huge honour to be included alongside 5 other inspirational women who have all shared their own experiences to help others.

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The recognition of our campaign now is particularly timely – our PETITION to extend maternity leave for mothers of babies born too soon nears 20,000 signatures and it comes just days before the launch of our NEW  Smallest Things red book Preemie Proud stickers.

Although The Smallest Things, launched in September 2014, campaigns for better care for parents following a NICU stay and for extended maternity leave for parents of premature babies, our site also offers hope and support to parents.

“Your site helped me to understand what we had been through…..unless you have lived it, no one truly understands x”

“I had PND and even now 6 years down the track I panic when I hear a baby cry- I thought it might be PTSD but was unsure. Your article has helped me to know that I am not alone.”

Just been reading your blog & it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amongst prem baby mums! Hated my thought train at times but now know it’s not just me!”

The three finalists will be chosen through a public votes; so please, if you’d like to help make The Smallest Things matter, VOTE for The Smallest Things in the Best Campaigner category.  click here and VOTE NOW!

Why not share the link with your friends and family too?

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Launching! Recognising the Mental Health needs of NICU parents

images (1)And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in”.

Haruki Murakami

Parents shouldn’t have to weather the NICU storm alone. Yet we know, after discharge from hospital, many of them do.

That is why The Smallest Things is launching a new mental health campaign, addressing directly the lack of understanding among primary healthcare professionals of the mental health needs of parents after premature birth.

Having a baby in neonatal care can test you to your very limits. The uncertainty, the shock; the highs and the lows.

As your body recovers from the physical realities of birth, your mind tries to piece together the medical world that surrounds you. People would often ask how I managed to get through our time in Neonatal Intensive Care; “You must have been so strong”, people would say, “You must have been so brave”. The truth is I was neither of these things. Like thousands of parents, I simply had no other choice.

Lost in a sea of emotions, the rituals of NICU soon took over. Expressing, traveling, incubator nappy changes, kangaroo care and hours and hours of watching and waiting. Your life becomes neonatal care and in the agony of leaving my baby each day I would turn to the advice of Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.

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The sun was shining on the day we left the hospital and I still remember the feelings of relief and hope for the future. The days of NICU would soon become a distant memory – or so I thought.

I quickly came to realise that our journey as prem parents had only just begun, only now the safety net of the neonatal unit and of other NICU parents who ‘got it’ had gone.

Questions about how I’d had made it through NICU became redundant – I’d made it this far because I had to. But I was still battling; just about holding on, trying to make sense of all that had happened. Rather than well-meaning comments from my health visitor such as “I bet you’re glad you’re home” and “it must have been difficult” (as well as other ill-informed comments about expressing, breast feeding and corrected ages), I was crying out for someone who understood. Someone who knew and would tell me that the overwhelming emotions of grief, loss, guilt and jealously, the anger, the anxiety and worry were completely normal for a NICU mum.

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The support for parents following neonatal intensive care is limited and The Smallest Things have received countess examples of where primary health care professionals such as GP’s and health visitors simply do not understand the needs of premature babies and their families. And yet, we know that more than 40% of mothers go onto experience post-natal depression following NICU, and that more than 50% show signs of anxiety and post-traumatic stress disorder. More must be done.

In launching our new mental health campaign, The Smallest Things will call for GP’s and Health Visitors to be trained to recognise and support the needs of parents following neonatal care. Will you help to raise awareness too?

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SIGN NOW! https://www.change.org/p/the-nursing-and-midwifery-council-gps-and-health-visitors-please-recognise-the-mental-health-needs-of-nicu-parents?recruiter=83525408&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

#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.

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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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More time for mums and their premature babies

It’s quite simple really, when your baby is born prematurely you miss out on weeks, often months of maternity leave.

Thousands of people have now signed to extend maternity leave for mothers of babies born too soon and this is what we are asking the government to do….

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.

Not yet signed the petition to give mums more time with their premature babies – SIGN NOW! 

Star Achiever Award!

I wrote recently about a preemie kind of proud.

Today I am simply proud!

My nearly five year old is receiving a Star Achievers Award at school this afternoon for working really hard with his learning.

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Just three weeks ago he spent 6 nights in hospital with respiratory difficulties.

Two days after coming home, he was back at school.

“He’s pretty tough”, I said to his teachers who were worried that he was going back too soon.

I am so proud of my little boy who doesn’t give up.

I am proud of my little boy – the youngest in his year; the one who should have started school this coming September, but instead was born into an academic year too soon.

I am so thankful to his teachers who give him extra support; who recognise the needs of a child born into the wrong academic year and who encourage him to be him – a four year old.

Like any parent I am proud of my Star Achiever.

My Star Achiever who keeps going; who takes everything in his stride…

My Super Star Samuel, who has been making me proud since day one.

15,000 people have signed!!!

15,000 people have signed because;

✒️… sitting beside an incubator is not be maternity leave
✒️…hooked up to a hospital grade breast pump is not maternity leave
✒️… waiting days, sometimes weeks to hold your baby is not maternity leave
✒️… 40% of NICU mums (compared to 5-10% full-term healthy delivery mums) experience post natal depression
✒️… more than 50% of NICU mums experience symptoms of anxiety and post traumatic stress disorder
✒️… NICU mums need support and time to recover
✒️… the average NICU stay costs families in excess of £2,500
✒️… premature babies develop according to their corrected age, based upon due not birth date
✒️… mothers and babies simply need time to bond together at home
✒️… premature babies are at increased risk of subsequent hospital admissions from otherwise harmless coughs and colds
✒️… mothers often have little choice but to leave the workplace due to premature birth
✒️… visiting your tiny baby everyday in hospital is not maternity leave
✒️… wires, monitors, breathing machines and intensive care is not maternity leave

Smallest Things

…have you signed??

Extending maternity leave for mothers of premature babies will make a difference to the lives of thousands of families and babies born too soon – SIGN NOW!!!  https://t.co/OQWaWZW4g3

What makes a preemie parent angry?

What makes a preemie parent angry?

  • Sweeping statements and generalisation?
  • No accounting for parents views?
  • Misleading newspaper headlines?

Or perhaps all three?!

Today on the Smallest Things Facebook page we shared a newspaper article with the leading title “Premature children should be treated as ‘Special needs’ pupils”. We asked you for your thoughts, and in the main you were angry.

“I totally agree that Teachers should receive relevant training on Prematurity (as should a lot of Healthcare professionals for that matter!) but to class a child as special needs based on Prematurity alone seems ludicrous. Surely each child should be assessed on an individual basis.”

“All children learn at and in different ways, every child should have the right to the schooling needs as an individual, not because they were premature, my eldest was a premmie and she didn’t need extra help, my second was a preemie and she needed extra help. It all depends on being an individual instead of being institutionalised into one way of thinking”

“Surely every child deserves to have their needs assessed on an individual basis. This is such a generalisation!!!”

“Each child is different. Your child’s strengths and weaknesses become apparent as they grow and develop and labels are given too often these days.”

“No way! Only one of my three prems is behind in development. They should be assessed as individuals”

These are only a small selection of your comments; you can read all the responses we have received and add your own by clicking here.

In a statement, Bliss Chief Executive Caroline Davey has said:

“We know from previous research that children born prematurely are at greater risk of behavioural and learning difficulties, and we think it is absolutely essential that, as this research suggests, children born prematurely should have more support when starting school, and that teachers should be adequately trained to deal with these children’s needs. 

“However, we continue to believe that it is up to parents to decide if it is right for their child to delay starting school. Every child born prematurely has different needs based on a range of factors, and while one child may be ready to start school with their peers, another may not. Our evidence supports this, and we are confident that with the right care at birth and support throughout their development, children born premature can reach their full potential.”

It is encouraging to see that the response from the UK’s leading premature baby charity echo’s so many parents views and is testament to the work that they do in supporting families and facilitating parent choice.

BLISS

As a preemie parent and as a children’s occupational therapist I have my own personal views.

Firstly; misleading headlines cause confusion and upset (although they do of course sell newspapers!). That  “premature children should be treated as ‘special needs’ pupils by teachers” is not a recommendation and does not feature in the original research which can be read here. It is nothing more than a headline.

Secondly; as a parent I know my child, I know our family and I’d like to think I’d know what is best for my son born at 30 weeks…. but, I second guess myself, wonder about the ‘what if’s’, and crave the reassurance that I am doing the right thing. For these reasons I am so thankful for the work of organisations such as Bliss and Summer Born Children for the support and advice they offer to parents of babies born to soon.

PREM

 

And finally, as an Occupational Therapist I understand child development and neonatal care. I know how critical early intervention can be and recognise that every child is unique. I have advocated in my professional life for all children born prior to 32 weeks to be followed up in their infant years, each assessed as individuals and given appropriate support, if required, according to their own individual needs.

But you know what – premature babies are special!

I will leave you with my favourite response to today’s headline… 

“I’d like them to do an article on the resilience and determination of the premature child….Definitely worth reading about that. Mine is feisty, determined and makes me proud every day.”

13,000!

13,000 signatures!

13,000 people; mums, dads, grandparents, uncles, aunts, friends and relatives.

13,000 people; enough to fill a premiership rugby club stadium!

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PETITION!

“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.”

Click here to SIGN NOW!

Extending maternity leave for mothers of babies born too soon matters; but don’t just take my word for it. Here are just a few examples of why people have been signing this important petition.

My daughter was also born 10 weeks premature. My maternity pay at full rate ended whilst my daughter was still in the NICU. As the highest waged parent I was forced to return to work sooner than i would have liked; our daughter was still ill, this led to a 8 month bout of postnatal depression for me and bonding issues with my daughter. I would have given anything to have spent more time at home with Martha getting her well, and getting to know her – I spent the first few months not letting myself get overly attached in case we lost her. We barely got her home when I had to return to work – emotionally i wasn’t ready!!

My son was born at 25 weeks and spent nearly 6 months in intensive care. It is important to allow extended leave so as to enable parents to spend more time with their preemie and to ensure that returning to work too soon is not another worry to add to the list of the many, many worries you have with a premature baby.

My daughter was born at 30 weeks and spent her first 6 weeks in hospital. Even when a premature baby is brought home the first few months (at least) are not “normal”. Anxiety- ridden days and nights watching for episodes of apnea and often return visits to hospital are par for the course. It would be amazing if you could at least have the weeks back that the baby was spent in hospital. These babies, given the traumatic start they’ve had, need even more care and time for bonding than term babies; anything that would prolong time for this would be a good thing.

My twins were 11 weeks premature and stayed in Nicu for 9 weeks. I’ve had to take a career break from work as no option to extend maternity leave or reduce my hours.

As a neonatal nurse I see every day the long term health and financial hardships families suffer when a baby is born too early. Extending maternity pay and leave would go some way to relieving the pressures these families face and help improve the quality of life of these fragile babies during their first months.

I also had a premature baby who was born at 33 weeks. I was hospitalised before I had her and have another child at home so my maternity leave has consisted of sitting next to an incubator after major surgery for days on end. Traveling over 2 hours to see my very sick baby suffering physical and emotional pain every day being told shear not make it over and over. Maternity leave should be extended to start when the baby was due or when they leave hospital at least for parents whose babies come too soon! When a baby comes home the emotional trauma and binding issues coupled with the anxiety and medical issues have such a huge impact that parents need time to deal with everything without worrying about going back to work with considerably less time off than other “full term” parents.

This one petition calls for extended leave for mothers of premature babies, focusing on the bond between mother and baby, mums mental health and a mothers ability to return to work. Many mothers are forced to return to work much earlier than they are ready to and others simply have no choice but to leave their career altogether. Whilst this petition specifically focuses upon the needs of the NICU mother, NICU dad’s matter too and we will continue to raise awareness of the realities of NICU and life beyond for all the family.

Next stop 15,000! ….

The Power of Storytelling

Each and every one of us has our own personal story. Our stories of course may be quite different and our experiences unique, but for parents of premature babies our journey into parenthood will overlap and our experiences may be reassuringly similar.

For the last year I have shared my own story of premature birth and of a journey that does not end at the NICU door. I have written about first holds, kangaroo cuddles, grief and loss. I have written about the sudden interruption of pregnancy, the uncertainty of the unit and the sights and sounds of neonatal care that stay with you long after you leave. I write to raise awareness; but I also write because of those who have been before. For the parents who have already shared their own experiences of NICU, whose stories I found when I needed them the most. Yes, each story of neonatal care will be different, but the similarities are often striking and this discovery can bring great relief.

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Storytelling can be an extraordinarily powerful tool – with stories that offer hope, humour, those that make us think or give us courage. Stories which help us to negotiate challenging times, to give us strength and to shine a light on the way ahead. Stories can bring us comfort and let us know that we are not alone. They can educate and reveal a hidden world. They can raise awareness and offer support.

Have you read a story that has helped given you comfort or hope? Have you got a story to share?

We are always on the lookout for stories of premature birth, neonatal care or life beyond (approximately 550-800 words) and we invite you to share yours.

Email Catriona at smallestthings@yahoo.com