Category Archives: take action

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. 

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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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.

 

 

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

GPs & Health Visitors; please recognise the mental health needs of NICU parents!

Every year 80,000 babies are born in the UK requiring specialist neonatal intensive care.

Few parents anticipate this traumatic start to parenthood and the journey through neonatal care is often one of uncertainly, pain and loss. Thrown into a world where incubators house the most fragile of babies, where rows of medical devises beep and alarm and where life support machines offer hope, it is no wonder that parents describe this journey as an emotional roller-coaster ride.

“You must have been so strong” I was told after bringing my premature baby home after 2 months in neonatal care. The truth is I wasn’t strong, I did what I had to do;  and now that I was finally home with my baby I was emotionally shattered.

Studies suggest that 40% of mothers experience post-natal depression (PND) following NICU (compared to 5-10% of mothers delivering healthy babies at full term) and that more than half experience symptoms of anxiety and post-traumatic stress disorder (PSTD). Any yet, each year, thousands of women are let down by the primary health care provision they receive.

General Practitioners and Health Visitors, those who meet mothers in the first few weeks after baby comes home, are in a unique position to make a difference. They must have the skills, knowledge and understanding however, to identify parents in need following neonatal care.

The Smallest Things, campaigning for premature babies and beyond, therefore calls upon The Nursing and Midwifery Council, The Institute of Health Visiting, and the Royal College of General Practitioners to ensure that their members are fully trained to recognise and act upon the specific mental health needs of parents following NICU.

With 4 out of 10 mothers experiencing PND after NICU it is vital that maternal mental health is taken seriously and that appropriate support and timely onward referrals to community mental health teams where needed are made without delay.

download GPs and Health Visitors, please recognise the mental health needs of NICU parents!

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

A journey through neonatal care

Alexa was born at 25 + 2, weighing 588g on February 19th 2014 delivered by emergency C-section due to severe early onset preeclampsia.

I read those phrases so many times; in Alexa’s notes and on whiteboards and I repeated it so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No-one asks me that anymore and I rarely think about it. And what a relief that is.

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Before she was born

I was diagnosed with early onset preeclampsia when I was almost 24 weeks pregnant. Like many other premature baby stories, it was a routine GP appointment that ended at hospital.  My normally unflappable GP looked concerned when she took a urine sample and my blood pressure. Then she called the hospital to say I was on my way and told me to go home and pack my bag. She told me to hurry because I was at risk of a stroke. The next morning the consultants were saying I wouldn’t leave the hospital before the baby was born. I remember thinking ‘but it is February what am I going to do in this bed until June?’  What they meant was that the baby was going to be delivered early.

Eight days later I started violently vomiting every 15 minutes, I had heartburn and I kept going to the loo. My blood pressure soared to 220/I can’t remember the bottom number when someone declared an emergency C-section. Nurses were panicking about cannulas and not being able to find veins. Someone waved a consent form urgently for me to sign. I remember my husband’s gorgeous and somehow calm face in a set of scrubs. I was surprised to hear a radio in the operating room. I fell in love with Amy the anesthetist. And then it was over. My husband saw our daughter. I was wheeled away. I was at risk of a fit and because of this I had to stay in hospital for ten days post-delivery.

A labour ward is hellish when your baby isn’t by your bed. There are happy joyous parents everywhere with healthy full term babies. I was terrified, disorientated and really upset.  I remember a kind of solidarity with the other neonatal unit mums, we would acknowledge each other shuffling baby-less from the labour ward to the neonatal unit and back and someone even managed to joke that the bouncing full term babies on the labour ward looked like seven year olds to us.

Being discharged

I wanted to leave the torture of the labour ward. I just wanted to go home. And once I got the all clear I rushed to pack up my room and got ready to go. But we left the maternity ward without a baby in a car seat. Just me, my husband and my suitcase. And it was too sad. I came home not pregnant anymore but there was no baby. We came home dropped my bags and went straight back to the hospital.

The early days

Alexa was tiny and skinny with dark brown skin. She didn’t look like the cuddly chubby babies we are programmed to expect. She looked weak and frail and was surrounded by a lot of unfamiliar equipment. I was shocked and frightened when I first saw her. At the start I was really confused and didn’t recognise her as my baby, I was afraid to touch her and I even panicked when some weeks later it was suggested I hold her. And I felt such a heavy burden of guilt that I had done this to her; my body had failed her. I had let her down already, before we had even started.

The (incredible) neonatal team at UCLH helped me move passed this and many other crazy and difficult thoughts and helped me find a routine. I would spend my intensive care days by her incubator, watching her, talking to her, singing to her, holding the tiny syringes of milk (she had 1 ml every hour), changing her miniature nappies and loving every tiny inch of her.

Medically

Alexa’s lungs were not good. We were in intensive care for 10 weeks not including a bounce back from a high dependency ward. She was on every breathing machine on the unit. The team tried to take her off the ventilator five times. With the help of steroids she went from the ventilator to lo-flow and then when the steroids finished she went right back to ventilator.

And in March 2014 she got really sick twice. Both times she was paralysed and sedated on an oscillator.  I will never forget how calmly and diligently the consultant led the team on both days, how steadily and respectfully everyone worked to understand what was happening. No-one one raised their voice or lost their temper or apportioned blame. People fetched us stools so we could sit and told us when to eat. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

Alexa had Retinopathy of Prematurity and needed laser surgery at Great Ormond Street to prevent blindness.

She got stuck on continuous CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision, I thought how on earth is she going to develop with this on her face and I was convinced it was going to damage her nose.  It didn’t impact her, her development sessions are always a joy and her nose is perfect.

Alexa June

Emotionally

I would love to say that we handled it gracefully, that we were so strong and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight/ no-mans land when you have a premature baby: a) you’re supposed to be pregnant but then b) you are on maternity leave but then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work.. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

People in the hospital used to say that mothers of premature babies go through a grieving process. I dismissed this at the time because Alexa was alive I told myself. And then I read Joan Didion’s ‘The Year of Magical Thinking’ about the death of her husband. She quoted Gerard Manly Hopkins:

‘I wake and feel the fell of dark not day’.

That was exactly how I woke up in those early days. It is a type of grief.

We were in hospital for seven and a half months and over this long course of time the shock, disorientation (and grief) of having a premature baby was replaced by the worry and sadness of being the mum of a sick baby. As she got bigger leaving her every evening got harder and harder. Maternal instinct is visceral and separation from your child is intense. Every night I woke up several times panicked soaked in sweat asking my husband where the baby was. Every night he would calmly say the same thing ‘It’s ok love she’s in Nursery 4, ‘XX’ is the nurse we called before bed and she’s fine’. This night-time ritual made me feel crazy.

And it didn’t stop until about a month after she came home.

The Expressing Room

The ‘expressing room’ was three plain blue chairs lined up in front of three blue expressing machines. It had bright florescent lights, no TV or radio and no privacy. And it saved my sanity. I poured my heart out to women in there and they to me. It was a counselling and therapy room where we willed each other on and told each other we could manage it.

The expressing itself was awful and amazing. A whole world of strangers talk about your ‘milk production’; nurses, consultants, feeding experts, they all talk about it to you, to your husband and to each other. You get over the embarrassment of it pretty quickly. There is not enough milk. Can you make more milk? She has no milk. She has so much milk. And if the milk is pouring out of you it’s a lovely way to focus and feel useful. But if it’s not then the whole thing becomes a very unique type of torture. Every 2-3 hours you hunch over the hideous expressing machine with an empty bottle not filling up. And the babies so desperately need mum’s milk to survive and fight on. There were a lot of tears. I ate everything anyone mentioned might help. I think I drank over 4 litres of water one day (this hurts your bladder A LOT). One Caribbean mum gave me a potion made in homes in Ghana that she got in Brixton and we cooked it up in our Hampstead kitchen. Eventually after 6 weeks of this, I got a prescription – and low and behold ‘mum’s milk’ came pouring out. We filled up our freezer for her.

Through it all the solidarity and strength of the mums in the expressing room kept me going. The support and the laughs. If I listed the jokes they wouldn’t be funny but there were tears of laughter on some days. And other days there were big wet tears of sadness and fear and frustration.

Family life on a neonatal unit

We were in hospital so long we had a lot of the usual baby ‘firsts’ with the neonatal team; a bath, sitting in a bouncer, tummy time,  tasting puree, a walk with Alexa in a pram.  It could have been awkward or strange but the Neonatal team made these moments fun and full of hope that we were able to do them.

Alexa July

I would spend hours with her sleeping on my chest. We read ‘The Wind in the Willows’ and ‘The Velveteen Rabbit’. We sang country songs (the poor nurses..). The hospital play specialist would come and see Alexa and me on Friday afternoons. To quote her, she would help me ‘bring the world to Alexa’. I loved our chats. Amidst the worry and heaviness of having a child in a high dependency unit, she reminded me of the joy of being a parent whose job it is to explain and explore the world with my daughter.

Nurses, consultants and registrars all became an extension of our little family of three. There was so much love in that ward, my heart still stops a bit when I think of it.

Leaving the Neonatal unit

While we were in hospital I developed an unhinged relationship with a pamphlet called ‘the pathway to home’. We never seemed to have it nor were people even mentioning it and the hallways of the hospital seemed lined with smiling parents reading it.  We had been in hospital for six months when it arrived at Alexa’s cot. And then suddenly we were planning for home, what we needed to do, what the hospital needed to do, who was involved, how to get ready. We had a discharge planning meeting with about 14 people giving input. Oxygen was installed in our flat (what?!) and friends sent me baby lists.

We finally left UCLH on a Friday night with our baby (and her oxygen tank) in a car seat. We had made the same journey twice a day for seven and half months to visit her and now she was making the journey with us. The cab driver went via Camden. I remember looking from gorgeous little Alexa and her oxygen tank to the Camden Friday night partyers and being jolted by the juxtaposition of it. I wanted to stick my head out of the cab and shout ‘Have Champagne!!! We’ve been in hospital for SEVEN AND A HALF MONTHS AND WE ARE FINALLY GOING HOME!!!

Early days at home

Champagne on the streets of Camden or no, we were not prepared for what it was like to bring Alexa home. We had become completely institutionalised and used to having a team of nurses and consultants around to help us and answer our questions and concerns. Alexa came home on a feeding tube, on oxygen, and I don’t know how many permutations of her medicine schedule we tried in order to line everything up correctly so that we gave the right gaps for the right medication and had some time for both of us to lie down. The seriousness and responsibility of it was terrifying. Her reflux meant that within 20 minutes of being home she vomited all over our cream carpet in the lounge. (I still smile fondly at that stain).

The winter was hard. We had to be really careful to avoid coughs and colds. And you can’t go to ‘Mini Mozart’ with an oxygen tank. It was lonely. And like any other working woman who has a baby I found it strange being at home a lot. But she was IN OUR FLAT! The joy of having her cot at the bottom of our bed and waking up with her in our room never got tired. And life got easier. The feeding tube came out quite quickly. The medicine reduced and then stopped. Home oxygen can be annoying and things take longer but it is manageable and before I knew it I was slipping the O2 tank onto my back and off to the park answering (with a pained smile..) for the millionth time the nosiness of a stranger who wants to know what happened to the baby.

And then they weaned the oxygen. The first time we took her off for 30 minutes; my husband starting skipping round the flat from room to room with her laughing and shouting ‘look at this, look at this’. It was so easy to move her without the wires and the portable tanks. And we saw those gorgeous little cheeks and face tube free! It was a slow slow wean and when she caught an inevitable bad cold (twice) we went to A&E and back to full time oxygen. But in May 2015 after a sleep study, she came off oxygen completely.

Now

Alexa is now a happy, chubby, curious, joyous toddler. And so we are a happy joyous family of three. Our life is happy and it is healthy.  We do normal things. We go to the playground, she plays with her friends and she sings and dances at bilingual beats on Wednesday afternoons. I have even returned to work.

alexa 2016

And every now and then when I see Alexa doing something ordinary and every day my heart bursts with relief and happiness at the normalness of it and the recognition that the pain and worry of our start is behind us. I look at her and I realise that we made it, the three of us, we have everything and we are happier than I ever thought we could be.

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With the support of her local MP Tulip Siddiq, Lauren is working to change the current UK legislation to make maternity leave longer for mothers of premature babies. 

SIGN NOW!  If you would like to support the campaign to give mothers more time with their premature babies, please SIGN the Smallest Things petition calling upon the Government to  “Extend Maternity Leave for Mothers of Premature Babies”

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

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

ST reception

I’m signing because…. “Time is precious when you have such a little one.”

Thousands of you have been telling us why you are signing and supporting our petition to extend maternity leave for mother of babies born too soon. Here are just a few examples of why you are signing and why you think it is so important for mothers of premature babies to have more time. Please take a little time to read x

“Because 2 months sitting in a hospital isn’t maternity leave. Anyone who can’t afford to take a long time off work faces losing precious time at home with their children because they can’t afford to take more time and have spent the time they could afford sat next to an incubator, unable to hold or even touch their own baby for large parts of that time.”

“I have had a premature baby i feel robbed as I cannot get to see him daily and my pregnancy was cut short so returning to work early would just be extra heartache!”

“My son was born at 25 weeks (15 weeks premature). We spent 5 months in hospital before we could bring him home. Even since he’s been home he has needed multiple operations and we have been restricted on what we can do due to lowered immunity. He is still oxygen dependant and I have suffered from anxiety disorder as a result of everything. I have to return to work due to financial strain as my husband is self employed. To have a longer maternity leave would mean I could spend the time with my son I never got for the first 5 months. A time which isn’t dictated around hospital stays/visits. To just be a normal mum.”

“My baby was 16 weeks early and have to travel 60 miles to Nottingham to see him we have been there 115 days and still waiting to get closer to home this has been the most stressful journey and mums who have prem babies need extra time off as their journey of being a mum hadn’t begun until they get home.”

“My son was born 11 weeks early..as well as worry about my son..extra worry about finances was awful.”

“We had a baby born 11 weeks early and it crippled us i lost my job because of the time i had taken off. We racked up huge debts on credit cards and 9 months on still struggling immensely to keep a roof over our heads. Something needs to be done to help other familues going through such a traumatic time.”

“I had a premature baby, the time spent in scbu is not the quality time other mothers spend at home with their children. Our time at home doesn’t start for weeks, even months later- we have been sitting next to incubators willing our babies to get better while babies born to term are being cooed over in their prams. Our babies often have health issues that continue after they leave hospital which means poorly spells and hospital visits which all eat into our precious maternity leave. Let’s make this fair!!!”

smallest things“I’ve seen at first hand the impact of having a prem baby as I work in a neonatal unit. The real bonding process only starts properly once the baby goes home.”

I’m signing because, “Time is precious when you have such a little one.”

If you agree please sign and share our PETITION to extend maternity leave for mothers of premature babies – SIGN NOW!

Too soon, too early – this family needs more time

Zara family

My husband always said I planned my pregnancy like a military operation. We got married in May 2014, got pregnant a couple of months later and our baby was due in April.

We knew what were going to call our baby from before I even fell pregnant. I did everything right, watched my diet, got my husband to give up smoking, took his and hers vitamins and joined the gym.  When I got pregnant I convinced my husband and we moved from our flat into a house. I have 14 baby apps on my phone and joined numerous baby and pregnancy groups on Facebook!

I draw up a timeline and planned what to buy and when. My husband and mother were going to be my birthing partners and we were going to attend parent craft classes. I was proactive in planning my maternity leave. I’d set deadlines to wrap up projects and had the date set for my mother to arrive from Nigeria to help.

I’d planned my maternity leave based on what we could manage financially. I was the main earner and luckily through my work would receive 6 months full pay as statutory maternity pay alone wouldn’t cover the bills. The plan was to go back once my 6 months full pay was exhausted and my husband, who was on a zero hour contract, would have more flexibility to work part time to look after the baby and save on childcare costs.

My pregnancy was not stress free. I had nausea throughout and felt very tired; but despite that I revelled in the fact I was going to be a mother, loved the cravings and enjoyed the weird and wonderful things that came with being pregnant. It was tough, but I wanted to feel pregnant.

I was 24 weeks and everything was going well, I just felt tired. I saw my GP who signed me off work to “catch my breath”. Apparently the stress of moving house and the Christmas hype had got to me.

On the Thursday and Friday night (1st and 2nd of January), I’d woken up feeling more nauseous than usual and with a bad headache. My husband insisted I saw my nurse. I dismissed it, but he’d been reading his “Pregnancy for Dummies” book and this is the post I put up in one of my pregnancy Facebook groups:

“My husband, who is definitely not a doctor has diagnosed me with pre eclampsia. I’m literally being dragged to the walk-in centre now. I’ve had a bit of a fever and sickness and diarrhoea for a couple of days. I’ve told him it could be something I’ve eaten and not baby related. But noooo! ! He is checking that we have enough stuff in the delivery bag, pads, comfy clothes etc. If I wasn’t so cold and felt so ill I’d be laughing – 27 weeks pregnant. Talk about over reacting!”

Two hours later, this was my post to the same group:

“Hubby was right. Baby will be here early apparently. They say I have pre eclampsia. I’m in shock obviously, done all the crying. The only way to cure pre eclampsia is to deliver the baby. Please pray for me.”

zara iiSo that was it, my baby was born at 27 weeks gestation.

That was not in my plan.

It was not on my spreadsheet.

Chizara Maya was born on the 5th of January weighing just 1lb 13oz.

A lot of what happened after that is still a blur. I went into auto-pilot and I’m not sure I have come to terms with it yet. I still cannot believe what happened. We spent 9 weeks in hospital and before I knew it my mother had abandoned her job and arrived in the UK, but my husband had no choice, he had to keep working because of his zero-hour contract.

We finally bought our daughter home after 9 weeks in hospital. I’d barely lived in this house and now I had a baby at home with me. We weren’t prepared. I wasn’t ready. We somehow managed to sort out a cot, the pram, the car seat, and all the other baby things you need before coming home. It was not how I’d planned.

zara and mumZara came home on oxygen. We had nurses coming to the house twice a week at first, as well as the health visitor and Physiotherapist. I made sure she was fully breastfed by the time we came home, but there was a lot to grapple with. I was suddenly very anxious. Zara was now home and not in hospital where she was solely in their care. I couldn’t sleep. What if she stopped breathing? What if something went wrong? The fear was palpable. I had no idea what I was doing. We didn’t get a chance to go to parent craft classes. I had no idea what to expect. I didn’t even know how old to tell people she was. Surely by 10 weeks of age she should be able to hold her head without support, she should be able to roll over by 12 weeks of age… but at this time, my child was not even meant to be born. 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.

I finally learned to relate to my daughter based on her corrected age. I had to recondition my mind entirely. Only then did I begin to relax and allow myself to watch her grow and almost enjoy the stage we were at. She had smiled at us, she was holding her head up and things were getting better in my head. I could actually see that my child was thriving.

Zara

Imagine my shock then when she was about 11 – 12 weeks and I started to hear from work about returning! I had made my original plans thinking my baby would 6 months old, not a tiny 12 week old. It dawned on me that even though my child was medically and developmentally 12 weeks old, she was born 6 months ago. I was torn. How could I leave my 12 week old baby? I was in no state mentally to go back to work. But we have bills to pay. I wasn’t sure what to do. I didn’t want to miss those small but mighty milestones in my baby’s life and I was only just beginning to sleep again. She is a breastfed baby and if I go back to work now would I have to start weaning her off breast milk? Would she take a bottle? She is still on oxygen at home…she still needs me.

Here come all the feelings of being cheated again and that old friend anxiety. What do I do?

I have decided to stay off work until Zara and I are ready.

How will we pay the bills? I don’t know.

My husband has been working non-stop since Zara was born, but I was the main earner and we need my income.

We will have to come up with something. I’m not ready, Zara’s not ready. It’s too soon.

With thanks to Ije McDougall for sharing her story

If you think that statutory parental leave should be extended for mothers of babies born too soon, please sign our petition – SIGN NOW!

Zara and dad Zara iiii Zara iii Zara i

The real cost of NICU

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. I felt cheated out of precious time together – I should still be pregnant, planning and preparing, yet instead I was grieving for lost time we would never get back.

smallest thingsBorn 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 parental 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 have written to the government minister, Nick Boyles MP, responsible for parental leave and are petitioning the Secretary of State, the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills, calling on them to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.

You can help! – Sign our petition and share with family and friends SIGN NOW!

 

Longer mat leave for preemie mums: 5 Reasons why!

Not many people know – if your baby is born too soon your maternity leaves begins the very next day. For many mothers this is weeks, often months before they bring their baby home from hospital – weeks, often months before their planned due date.

The Smallest Things believe that maternity leave should be extended for mothers of very premature babies – here are just five of the reasons why we think you should support this change too!

1. Financial – Be it travel, parking, accommodation, extra childcare or meals, the cost of having a premature baby in neonatal care soon adds up. Latest figures suggest that on average parents of premature babies spend an extra £2,256 over the course of their hospital stay. In addition there is little financial support for parents whose babies have been born too soon. For example, you cannot apply for the disability living allowance and the flexibility of taking paid, unpaid or sick leave from work is not possible – maternity leave begins automatically the day after birth. Parents have enough uncertainly, worry and stress, without the added pressure of wondering if they can afford to visit their baby in hospital.

2. Bonding – Mothers of babies born too smallest thingssoon 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. Then watching and waiting for more holds, a chance to change a nappy through an incubator porthole or an opportunity to hold an NG tube as drops of milk pass through a tube into their baby’s tiny tummy. NICU is not an environment conducive to mother and baby bonding. In fact, with the bells and buzzers, tubes and monitors, it is not an environment conducive to becoming a mother at all! It can be months before a baby born prematurely comes home. Months where precious time to bond has been lost and a lost time many mothers morn. Extending maternity leave cannot give back this lost time, but it can give added time; precious time in which to spend at home to bond, benefiting both mum and baby greatly.

3. Development – Premature babies are babies for longer, developing according to their ‘corrected’ age, (calculated according to their due date) rather than their chronological age. This sees parents of premature babies returning to work when their baby is physically and emotionally less developed than a baby born on their due date. This can be a worrying time for parents, many of whom would not have planned to leave their baby when they were still so small and so dependent, and particularly worrying for parents whose baby, like many, has ongoing medical concerns and regular hospital appointments.

4. Maternal Mental Health – Studies repeatedly show that the risk of depression and anxiety is higher for mothers who have spent time in neonatal care, with many reporting symptoms of post-traumatic stress disorder (PTSD). Reducing the financial burden by extending statutory maternity pay and giving back precious time to bond can help to ease worries and strengthen relationships; but most importantly it would allow time to grieve, to process and to recognise the symptoms of PTSD or depression. In turn, time would be available for mothers to seek and to receive the much needed support.

5. Employment – Mothers often have plans of when and how they will return to work. When a baby is born unexpectedly early these plans for many no longer seem appropriate. For example, a mother who planned to take six months leave will discover that at 6 months her premature baby is only three months old according to their corrected age. Regular hospital follow up appointments, the risk of colds, coughs and flu, ongoing medical difficulties and maternal mental health all impact on a mothers ability to return to work. Extending maternity leave would give mothers the time to plan, prepare and for them and their baby to be stronger, enabling them to return to work successfully and in line with their original wishes.

Change is possible.

With a precedent set in other European countries we are calling for the UK to be next!

If you agree that parental leave should be extended for mothers of babies born prematurely, please sign and share our petition – SIGN NOW!

 

 

It’s the Smallest Things: Our Action for NHS Change Day!

images1 in 9 babies are born prematurely (prior to 37 weeks gestation)

That’s 60,000 babies born early each year in the UK, with nearly all requiring specialist NHS neonatal care.

The Smallest Things was created to raise awareness of the realities of life in neonatal care; to cast light on an often hidden world and to campaign for more support for parents in the aftermath of their journey.

Since our launch six months ago, a constant theme has been mothers recognising their own stories in our words; but it goes further than this – for some for the first time have realised that they are not alone in their journey, that their feelings of loss, guilt and anxiety are shared by other NICU mums.

So, what is needed?

What can we change on NHS change day?

It doesn’t need to be a grand gesture or big action.

No, it’s all about the Small Things of course!

All important cuddles

All important cuddles

– A health visitor who knows to correct your babies age on their weight chart

– The GP who understands that your baby will not be meeting their ‘6 week’ check milestones… as they haven’t reached their due date yet!

– A friend who realises that just because your home, your journey is not over.

– The health visitor who really asks how you are, who listens and allows you share your story.

A doctor who understands that to a preemie or a preemie mum a cold is not just a cold.

As part of our ACTION for #NHSChangeDay we pledge to:

untitled (6)Continue to raise awareness through story telling. Sharing the experiences of parents during and after their stay in neonatal intensive care.

untitled (6)Empower mothers to share their stories with health professionals, creating a “things to know about me & my early baby” postcard.

untitled (6)Link up with health care professionals, highlighting the link between PTSD and time spent in neonatal intensive care, so that timely and appropriate support can be given.

imagesG5IGIJEMIt really is all about the Small Things, but it’s the Small Things that matter!

Time to Talk: PTSD the hidden cost of NICU

#TimetoTalk

I saw a post last year; it simply said “PTSD – The hidden cost of having a premature baby?”

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.

seeing our son for the first time

seeing our son for the first time

It is widely reported that parents who’ve spent time with their babies in neonatal care are a greater risk of developing anxiety or post traumatic stress disorder (PTSD). Some studies suggest that it affect as many as 70% mothers following NICU and given the nature of NICU this shouldn’t come as a surprise. Yet this is a topic that remains relatively unspoken about and more importantly there are limited, and in some areas no resources dedicated to it.

PTSD can have a significant to severe impact upon every day life; from re-experiencing or re-living events with often negative thoughts, by avoiding or becoming nub, to the feeling of being constantly on edge with anxiety and physical symptoms such as headaches, feeling nauseous or becoming light headed. I remember the first time I felt panicked and sick with PTSD, I was returning to the neonatal unit for the routine 4 week follow up review. Walking into the hospital I could hear and feel the sound of my heart pounding in my head; I could hear the beeps of machines and if I closed my eyes all I could see were wires. I felt sick to the bottom of my stomach and there was nothing I could do to stop it.

PSTD often presents itself after the acute phase of neonatal care; once you have left the claustrophobic confines of the unit and when the beeping of machines should be far behind you. The support network of the hospital can disappear over night and you are left to wonder how on earth you made it through. Family and friends may assume that the difficult times are behind you and accessing the usual mum and baby groups for support can be a struggle in itself. I’ve written before about answering the dreaded “how old is your baby” question . You try to explain prematurity, corrected ages and what being in NICU was like, but find you are greeted with perhaps good-willed, but often insensitive remarks such as “I could never have left my baby in the hospital” or “At least you didn’t have to go through proper labour”.

By the way, if you’d like to know what not to say to the mother of a premature baby, then check out our Top Ten here.

smallest thingsRather than being a supportive environment, mothers of premature babies can find the usual routes of seeking support closed to them. These exchanges can exacerbate negative feelings and bring back painful memories – I personally struggled to listen to others speaking about how they couldn’t put their new baby down, when all I would see was many tiny baby so far removed from me in his incubator. In addition many mums will not have the option to go out and seek help, finding themselves literally isolated during the winter months when their baby is still too fragile to be exposed to the cough and cold season.

The Smallest Thing campaign is seeking to raise awareness, not just within the general public, but also to the team of health visitors who will often make that first contact. Tommy’s have developed a brilliant Wellbeing Plan endorsed by NICE which helps women and health care professions to discuss mental health. With the knowledge that mothers have a significantly grater risk of developing mental health difficulties if they have had baby in neonatal intensive care we are calling on all health visitors to use the Wellbeing Plan or similar tools to discuss mental and emotional well being early on in the posy NICU journey.

Finally, mental health and the well being of others should be everyone’s business. NICU remains a mysterious and unknown place to those who have not lived it and for that reason perhaps it isn’t immediately obvious to see a link between time in NICU and PTSD. Raising awareness and speaking honestly about our experience and the true realities of neonatal care is therefore crucial:

Of the uncertainly and unknown. The panic that sets in when your baby is not in their incubator space when you arrive, have they been moved – is the news good of bad?

Of the physical pain at having to leave your new born everyday. The feelings of emptiness and loss.

Of the ups and downs; the lines, wires, monitors and alarms.

Of the hot, close, claustrophobic environment.

The security buzzers at the entrance and of the constant rigorous hand washing.

Feeling watched as you attend to the simplest of cares such as changing a nappy – of struggling with the simplest of cares such as changing a nappy!

And the feelings of guilt, jealousy, grief and loss that go hand-in-hand and in stark contrast to the feelings of joy, anticipation and hope.

I will always be a NICU mum; and PTSD will always be lurking around the corner.

Vote Now! – Should maternity leave be extended….

smallest thingsMaternity leave for mothers of premature babies begins weeks, sometimes months before they can bring their baby home. The Smallest Things has written before on why we think maternity leave should be extended for mothers of babies born too soon, but we’d love to know what you think?

Should maternity leave be extended for mothers of very premature babies?

Fair parking charges for parents of premature babies!

 

 

untitled (4)I’ve taken action!

I’ve written to two hospital chief executives today, one from each of the hospitals where my boys have spent a total of 10 weeks in neonatal care.

My family have spent hundreds of pounds on hospital parking to be with our babies in NICU, other parents have gone through the same and this is backed up by evidence from Bliss and their “It’s not a game” report.

 

I do not believe that parents are visitors to the hospital; after all, visiting hours do not apply to them. They are mum and dad, offering vital care for their new born.

I do not believe that a mother should have to pay to park to feed her fragile baby in hospital or to deliver her expressed breast milk.

I do not believe a dad should have to worry about mounting parking fees, deciding whether he can spend another hour waiting for that precious skin-to-skin time.

Parents of premature babies are integral to their child’s care, and with the already very real and high cost of having a baby in hospital, reducing or scrapping parking fees for parents in NICU could make a real difference.

You can read my letters on the links below. You may even want to copy them to send to your local chief exec – take action today!

parking

Croydon University Hospital – Parking Charges Letter

Kings College Hospital – Parking Charges Letter

Parent or Visitor: The parking meter ticks on regardless

Recent hospital admissions with the nasty RSV winter virus has reminded me just how costly hospital stays can be. Not on the scale of finding yourself stranded with a premature baby in New York, our NHS is free after all at the point of use; but the cost of having a premature baby in the UK is very real and can continue long after neonatal care.

not a gameIn 2014 the Bliss It’s not a game: The very real costs of having a premature or sick baby report highlighted that parents of premature babies spend on average an extra £2,256 over the course of their hospital stay. As a parent of a premature baby I recognise these costs, but I also know that the costs do not end there. Babies born too soon are regularly followed up within neonatal clinics and are at increased risk of subsequent hospital admissions due to the complications of premature birth. For many, hospital visits, admissions and the associated costs become part of everyday life.

hospital parkingFor us a recent three night stay in our local hospital led to parking charges of more than £75. Add in a second child who had also been born prematurely and who the following week also required 3 nights in hospital (RSV is catching!) – the costs quickly mounted up. The hospital ‘visitor’ parking charges don’t take into account that you are not just another visitor. You are your child’s carer; comforting them, washing them, changing them, feeding them, helping them to take their medicine, up during the night to adjust their oxygen mask when the monitor alarm sounds – you are mum or dad. The ‘visitor’ visiting times don’t apply to you; as mum or dad you are there day and night, yet the parking meter ticks on regardless.

smallest thingsFor parents in neonatal care though the admission and parking costs can last weeks, sometimes months. Although some units now offer reduced parking rates for parents of babies in NICU, the costs still add up over a prolonged period of time and many units don’t advertise their reduced parking costs widely. Unlike having a child admitted to a children’s ward where you remain resident with them, parents of babies born too soon come and go (how we’d love to stay with them). You are still mum and dad though; attending to cares, establishing feeding, learning how to care for your new born however tiny they may be. This is a precious time, an important time to bond and one that should not be compromised because of the cost of parking. During our 8 week NICU stay I recall waiting til gone 5pm at which time the street parking became free and I would look forward to the weekends, when again the street parking was free. I remember finding out that I could apply to the council for a residents parking permit – the permit was in my new baby’s name as he’d stayed at the hospital so long and could now be classed as a local resident. I couldn’t work out if this was good news or not! 

(I had asked during our first week about parking charges, but had been told there was no support for parking costs. I only discovered this wasn’t the case weeks and hundreds of pounds later when another mother mentioned it in the expressing room).

bliss smallest thingsParking and the cost of hospital life should not restrict parents, for whom by the very nature of premature birth are going through an already stressful and worrying time, from seeing their babies. That is why I am supporting the Bliss campaign to tackle hospital parking charges and why I shall be writing to my local hospital trusts – watch this space for feedback!

Still so small – Why extending maternity leave matters

1st picLast week the Smallest Things published a post about extending maternity leave for mothers of babies born too soon. This has been our most popular post to date, by a long way. It is clearly an issue that not only matters to people, but is an issue that sticks in parent’s minds even years later. It resonates because of the precious time lost with your baby. It resonates because of having to return to work when your baby is still so small. It resonates because you are only just finding your feet as a mother or are still caring for a sick child when work come calling. It resonates because when all is quiet around you, you can still hear the sounds of monitors and the air in the breathing tubes – the memories of NICU fade in time, but for mothers returning to work the feelings are still strong and very real.

smallest thingsThere are economic and emotional arguments as to why maternity leave should be extended for mothers of premature babies. Both are compelling, but it is the emotional argument and the emotional pull for parents of premature babies that will help frame the discussion.

If you have a story to tell about returning to work after a premature baby or would like to share your thoughts then please do get in touch at smallestthings@yahoo.com

If you agree that parental leave should be extended for mothers of babies born too soon, please sign and share our petition – SIGN NOW!