Tag Archives: maternity leave

Too Small, Too Soon – I Couldn’t go Back to Work 

My son Louie was born in July 2016, 12 weeks premature. He spent 116 days in neonatal intensive care, nearly 4 months, and came home on at the end of October. It was the second best day of my life, the first being the day he was born – even though that was an emotional rollercoaster! 

Louie on the day he was born


Louie went through a lot during his stay in NICU; breathing problems, chronic lung disease, NEC, suspected meningitis, metabolic bone disorder, growth problems and a hernia repair. 

He came home on home oxygen as well as lots of medications. How could I possibly leave my baby after only 2 months of having him home?

I could have taken the rest of my years entitlement, then it would have been 9 months that Louie would have been home; but I still didn’t feel as if I could go back so soon. 

I couldn’t trust anyone else, apart from my partner who worked full time, to give Louie his meds and to check his breathing, making sure his oxygen was ok. And what about all his appointments and check ups -how could I take all this time off work? So I decided that I couldn’t go back….

I am currently a full time stay at home mum and even though it is hard financially it has to be done. 

Louie is now 14 months old and he’s still so tiny, weighing just over 14lbs. He isn’t sitting on his own just yet, although he thinks he can! His mind wants to do things but he’s just isn’t physically able. 

Would more time have helped? I think so. Longer maternity leave may have prevented me from handing in my notice. I could have used that time to adjust, to have found care for Louie, someone I could trust. Any mum will always do what is best for their baby and at the time and looking back I knew I was doing the best thing for Louie and for me. 

Louie aged 14 months


I really hope the government will look again into this matter. No one wants their baby to be born early and with medical problems. How can it be right that we are denied time with our babies or forced to give up work? Having a premature baby is nowhere near the same as being the mother of a healthy full term baby – our circumstances are totally different and our maternity leave entitlements should be too. 

Louise Harrison 

If you agree with Louise, please sign The Smallest Things petition to extend maternity leave for mothers of premature babies. 

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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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.

 

 

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

He has been busy planning his Superhero themed party with great excitement!

And this year’s theme seems pretty apt for my Samuel Superstar.

 

I was 29 weeks pregnant this time exactly five years ago.

I was just starting to think about cots and buggies, cribs and baby grows.

I’d booked onto my antenatal classes, still weeks away, and was yet to confirm my last day at work.

 

This time exactly 5 years ago I felt a sudden panic – I wasn’t ready!

‘You’ve still got 10 weeks to go’ my colleagues told me as I began to fret about baby grows and nappies.

Yet I still felt a sense of urgency – perhaps my nesting instincts kicked in.

Despite this, I could have no idea what was to happen the very next day.

 

Having a premature baby sends you into a wild journey of uncertainty, shock and disbelief.

My son was born just hours after my waters had broken at home.

It didn’t seem real.

 

The room was filled with doctors, nurses and midwives as they attempted to resuscitate our tiny baby for six long minutes.

An alien looking capsule was bought into the room and our son was whisked away.

I was numb.

Just as quickly as the room had filled with people, quite suddenly we were alone.

I’d become a mum for the very first time,

but there were no cries of joy, no words of congratulations and I had no baby to hold.

 

This is how I became a mother, 5 years ago.

 

Becoming a parent to a baby born too soon;

having your baby taken away to neonatal intensive care, is one the hardest things a parent will ever have to do.

Saying goodbye to your tiny baby, leaving them alone in their incubator as you head home empty is perhaps even harder.

 

The NICU journey is tough, the effects of which cannot be underestimated and stay with you long after bringing your baby home.

But the NICU journey can also be special….

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I witnessed my superstar as he took his first breaths without the support of a ventilator, and I was overcome with pride.

I watched in wonder as he learned how to co-ordinate the feeding reflex, (usually learnt within the womb) and saw as his micro nappies began to fit his tiny body.

We spent hours and hours together in kangaroo cuddles as I tried to block out the sounds around me,

And his strength for someone so tiny amazed me every day.

 

Now, five years on, I remember just how far we have come.

He is desperate to be a real superhero, asking me every day how he can get special powers like Superman or Spider-man.

Ideally he would like to be able to swing on webs or fly through the sky,

But to me he is Samuel Superstar, and I think he’s pretty amazing already!

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If you believe that mothers & premature babies need more time together after neonatal intensive care please SIGN our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

#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?!

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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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Just a Little Longer Please: Time After NICU

10 weeks early, my little baby, is with us far too soon.

I’d like to keep you safe inside,

Just a little longer please.

 

The nurse showed me your tiny face, wrapped in a blanket tight.

I reached out to touch your cheek, a mothers instinct strong.

I couldn’t touch you as you couldn’t stay, intensive care was needed.

I longed to shout as I watched the team whisked you away,

“just a little longer, please!”

Your little eyes were open, when we met in neonatal care.

Terrified I reached inside the incubator walls;

a tangled mess of tubes and wires, stick thin limbs so small.

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

How can I leave my baby – just a little longer please.

 

6 long days I waited, to hold you in my arms.

Lines and tubes obscured your face, the monitor alarmed.

Ding, ding, ding the ringing went, our time together up.

I whispered to my baby – “just a little longer please.”

3 hours became a golden rule, expressing on the clock.

Now we’re allowed kangaroo cuddles, time just for you and me.

But once again, three hours are up, is it really pumping time?!

I’d hold you close and feel your warmth, sometimes our only cuddle of the day.

I look to the nurse, she looks to the clock – “just a little longer please”.

 

Weeks and months in neonatal care, our journey has been immense.

You’ve grown and you are stronger, but my baby you’re still so small.

Home we go at eight weeks old, your due date still not reached.

 

At home we can be together, no monitors or alarms.

For the first time in forever I begin to be your mum.

I feel the pain we’ve been through, I stop to take a breath.

I realise now, what other NICU mums will know, my journey has just begun.

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More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

My boss has started calling, return to work is near.

My maternity leave is over, but please it’s just too soon.

We’re only now just bonding and my nerves are much too frail.

It can’t be time to say goodbye, please just a little longer.

Just a little longer please.


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If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

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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! 

An incubator holds my baby

An incubator holds my baby; a baby I am no longer with.

I long to feel just one more kick, to feel and see my belly move one last time.

I promise I won’t complain about my aching back, the tiny feet that push at my rib cage or the baby that bounces on my ever weakening bladder. 

I miss my baby; I miss my baby bump.

An incubator holds my baby; a baby I am no longer with.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’.

Through the incubator, I’m almost too scared to touch, my tiny little person who has arrived here far too soon.

My baby isn’t ready, in fact nor am I! And now he’s here, my heart breaks every time I say goodbye.

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An incubator holds my baby; the incubator that has taken my place…

and here I stand, desperate to shout – ‘it’s me, I should be the one keeping him safe’.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’

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Mothers of premature babies wait days, if not weeks to hold their baby for the first time. The uncertainty of neonatal care and the journey from birth to discharge home can last months – this is why the Smallest Things are campaigning for NICU mums to have more time with their babies.

If, like us, you think paid maternity leave should be extended for mothers of premature babies, please SIGN our PETITION!

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”

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! ….

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

ST reception

Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

radio 5 live

Sarah Miles and Catriona Ogilvy Radio 5 Live

 

Top 10 of 2015!

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

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

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

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

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

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

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

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

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

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

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

smallest things

and finally, our most read post of 2015….

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

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

 

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

Eva & Charlotte’s story

GetAttachmentOn Monday 30th November at our Westminster Reception, Sarah Miles, mum to Eva and Charlotte, spoke bravely about their journey through neonatal care. Her words were powerful and moving and captured the reasons why parents of babies born too soon need more time.

Sarah shares her words with us here….

The Smallest Things reception – Eva & Charlotte’s story

“Hello. I’m here as a supporter of the campaign to extend maternity leave and as a mum. And probably the best way to explain why I’m supporting this campaign is to tell you the story of two VERY little girls.

In 2011 I found out I was pregnant. It wasn’t a surprise because, like most things in my life, it was carefully planned. Working in the media there’s not a great deal of job security and I’d strategically manoeuvred myself into a permanent role after years of freelancing in order to get some paid maternity leave and – most importantly for me – a job to return to.

Yet life doesn’t always follow your best-laid plans, as many of us in this room can attest. At our 12-week scan we were speechless yet delighted to find out we were expecting identical twins. And, with the benefit of hindsight, naive to all the issues this can bring. We were scanned fortnightly and at 22 weeks were told I had too much amniotic fluid. At 25 weeks I had bleeding and was admitted for 10 days’ observation. At 28 weeks, the day before I was due to have amnio drainage and 12 weeks early, my waters broke and I gave birth to two beautiful girls by emergency c-section. Eva weighed 980g (2lb 2oz) and Charlotte tipped the scales at 1.1kg (2lb 8oz). They cried as they emerged – a good sign – but neither could breathe by themselves, let alone feed orally, maintain their own body temperatures or fight off infection and they were resuscitated before being whisked away in incubators to the neonatal unit seconds after delivery.

And so began our adventure through NICU. While in recovery, we were told that Eva had a condition called TOF/OA – trachea-oesophageal fistula/oesophageal atresia – which basically meant her mouth wasn’t connected to her stomach and she couldn’t swallow. Suddenly my excess amniotic fluid made sense. And life-threateningly, her oesophagus was connected to her trachea so fluid could enter her lungs. She was transferred from Queen Charlotte’s Hospital in Hammersmith to Chelsea & Westminster Hospital for immediate surgery, while I stayed behind with Charlotte in NICU for five excruciating days. Eva was given a 50/50 chance of surviving the operation.  That was the first – and certainly not the last – time I begged, pleaded and bargained with the universe to let her survive. There’s a lot of that in neonatal units: willing, wishing and wanting your baby to make it, yet having no power to affect the outcome. It’s torturous.

But she made it. And on day 5 Charlotte was transferred to the same hospital – but never the same ward – to make our lives just about bearable. Expressing eight times a day, reading medical papers, hanging around in corridors for separate ward rounds (and hoping the two didn’t coincide), sitting by incubators, watching numbers on screens, reading obs charts, listening to bleeping machinery….. all this quickly became our normal daily routine. Learning to change a nappy through the portholes of an incubator, gingerly holding twig-like legs up without disturbing wires…. we learnt how to do our babies’ “cares” in a way that was far from normal. It was two weeks before I could have my first precious cuddle with Eva, and even then I was terrified and spent the whole time staring at the numbers on the monitor. How could this tiny baby the size of her daddy’s hand survive and grow?

Sarah Miles

Within a week my partner was back at work and this new routine was one I did alone. Dashing between intensive care, high-dependency and the expressing room – experiencing the highs of a wonderful cuddles and the lows of infections, blood transfusions, cannulas and backwards steps to ventilation. For most new mums, the sound of their baby crying is cause for concern, for NICU mums it’s a sign of positivity – growing lungs, healthy reactions.  With your baby in a plastic box, or as somebody wonderfully called it “a womb with a view”, you’re denied the simple pleasures of new parenthood. Picking your baby up, changing their nappy, feeding them when they’re hungry – all of these things are done to a schedule dictated by a doctor and implemented by a nurse who you have to ask permission from. You’re robbed of those precious new first experiences while in a constant state of fear your baby might die. I was desperate to hold my girls but terrified it might hurt them or cause distress.  ‘It doesn’t matter,’ you tell yourself, ‘As long as they get better and grow. They’ll come home and then we will start properly. Like it should have been. This is just a nightmare to get through and then we can start again at the beginning.’

When Charlotte and Eva were allowed to start wearing clothes, it was another baby step towards ‘normality’. Us NICU mums crave normality – we’d roll our eyes and hold our noses at explosive pooey nappies and yet ANOTHER outfit change yet inwardly delight and revel in it. This is what normal newborns do! We’re getting closer. And when Charlotte was moved from an incubator to an open cot I was literally walking on air. ‘You mean I can just lean over and touch her? Without asking?’  While in the next room Eva was being put on yet more antibiotics for a suspected bowel infection and I wasn’t allowed to touch her because she was too unstable. Being told you can’t touch your baby is one of the worst things you can say to a parent. But of course you want what’s best, and if that means depriving yourself of bonding hugs, then so be it.

It was the nurses and other mums on the unit that got me through the day-to-day of NICU life. We called Eva and Charlotte’s nurses her ‘aunties’ (as none of their real aunties were able to visit) and the friendships I made with the other mums will last a lifetime. We supported each other through bad times and celebrated the good times – the baby steps forwards – and when it was finally time for a baby to go home we would all celebrate. While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines. Put simply: normal mums worry about their baby sleeping through the night, NICU mums worry about their baby surviving the night.

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After 79 long days, 5 days before my due date, Charlotte finally came home, weighing 2.6kg (5lbs 5oz) and behaving pretty much like a newborn. But at the same time Eva was struggling to recover from a failed operation to fix her oesophagus. Ecstasy and agony simultaneously. Despite having one daughter at home my life got harder, rather than easier because infection policy dictated that I couldn’t bring Charlotte back onto the unit. So I was forced to leave my fragile ‘newborn’ baby every day, who I had worked so hard to breastfeed, to visit my arguably more fragile baby in hospital. It was unbearable. I hired a nanny to look after Charlotte, my mum helped out and my partner Dave swapped his working Friday for a working Saturday so that friends could take over. Dave took one week of paternity leave when Charlotte came home and one week of holiday. Because we had to divide ourselves between home and hospital we rarely saw each other and when we did we were too exhausted to communicate. There were no shared joys of our new babies – just handovers of information.

Eva needed to reach a certain weight before they’d operate again so we were in it for the long-haul. But she was thriving and her smile when I arrived every day made it all worthwhile. She loved watching the jungle animals rotate on her mobile and listening to music from toys. Along with the nurses we devised a daily routine that included sitting up in her bouncy chair watching what was going on.

In total Eva was in hospital for 197 days before she came home to die, having suffered brain damage during her final operation. She died on 23 February, Day 201, aged six and a half months. Her hospital stay had been one day longer than my pregnancy.

I don’t have the words to describe the time that followed, apart from to say that Charlotte gave me a reason to keep going. She was, and still is, my salvation.

Three and a bit months later my boss took me out for dinner and asked if I was planning to return in August, when my year’s maternity was up. I’d had six weeks of 90percent pay and then statutory pay until nine months. I knew I wasn’t emotionally ready so I asked for more time – unpaid leave – but they said no and sent me a letter to sign saying I was resigning. As I signed that letter part of me knew that I was signing away the career I’d spent 15 years working hard to build up.

A couple of months later my partner Dave was made redundant. We knew we were going to have to do some significant belt-tightening to live on one salary but to live on nothing? So I accepted a month’s project work at my old company for around £20K per year less than the job I’d just resigned from. Thankfully he found another job and I didn’t stay on. When Charlotte was 18 months old I started doing a little bit of self-employed freelance work from home while she went to nursery two mornings a week. Well I say, every week but I’d guess she was off about half the time with chest infections so I wasn’t able to commit to much work.

Fast forward through my second pregnancy (which I wish I could) – this time a full-term healthy girl called Iris – and self-employed mat leave to today, and I’m still sporadically freelancing from home, which doesn’t really work with childcare commitments and school runs. So I’m looking for a part-time permanent job but having no luck. Part-time editors are few and far between, and often are only those that have negotiated hours when they returned from maternity leave. Something I was very aware of before I got pregnant. But as I said before, the best-laid plans don’t always pan out…

If I’d have had more time after Charlotte came home and Eva died, I might have felt strong enough to negotiate a return to work on my terms and not be in this position four years later. But because I felt I had no choice but to resign, here I am. And while we’re by no means queuing at the food bank just yet, it has had a huge effect on our family and so far has prevented us from buying our first home together.

Time spent in NICU is simply not maternity leave. It’s a nightmarish version of ‘what should have been’ where doctors are trying to replicate the conditions of your womb because your baby or babies should still be in there. Every year, we celebrate Charlotte’s Homecoming Day – 79 days after my twins were born and five days before they were due, because this is the day she truly became ‘ours’. The first day we looked after her independently, the first day she slept in her own moses basket, the first day she was breastfed on our sofa, the first day her nappy was changed on her changing mat. It was, in many ways, the day she was born. Yet it was three months after my maternity leave had started and three months before her sister would leave the hospital.  And that’s simply not fair.”

 

If like Sarah you believe that familes of babies born too soon need more time, please do sign our PETITION to extend parental leave for parents of premature babies – SIGN NOW!

The parental leave loophole

Mark and Sarah had their premature baby, Sophie, nearly three years ago. This is their story and why they are supporting the campaign.

Sophie iiFollowing a final ‘babymoon’, Sarah had a 32 week scan as part of a research project. Having had a normal pregnancy, we turned up for our scan excited to get a ‘good picture’ of what our little one looked like. There was silence as the sonographer scanned our baby and then disappeared from the room. A foray of consultants arrived speaking in hushed voices.  There was excess fluid in our baby’s abdomen and no one knew whether it was a sign of a severe infection or a chromosomal abnormality.  Tests were performed and we were sent home to wait for the results 48 hours later – but not before termination was suggested to us as a possibility.

The next day Sarah did not feel the baby move and decided to get our baby checked at the hospital’s Maternal Assessment Unit.

Our baby’s heartbeat was irregular so Sarah was admitted immediately to Labour ward while staff tried to delay delivery for 48 hours to allow time for steroids to be given to help our baby’s lungs develop.   A few hours later, shortly after Mark arrived, with the baby’s heart rate plummeting, Sarah was rushed for an emergency caesarean and Sophie was born fighting for her life.

Sophie had to be resuscitated in the delivery room and was immediately rushed to intensive care without us having any chance to hold her. At 32 weeks, she weighed 4lbs 8oz – ‘a good size’ we were repeatedly told and ‘it’s lucky she’s a girl as they’re fighters’. That evening we asked one question: “Will our baby live?”.  There was a long silence. “We don’t know. She is very sick.”

Sophie iThe next 48 hours were critical as the amazing neonatal team worked to stabilise Sophie and identify what was making her so unwell.  After 72 hours, Sophie stabilised and was diagnosed with listeria.  Sarah had not been ill but had clearly passed it on to her; which was something she struggled with. Sophie spent a total of six weeks on the neonatal unit, slowly getting stronger and gradually we were able to hold her for short periods rather than just touch her through an incubator.

Mark took his paternity leave at once and was the main person at Sophie’s bedside whilst Sarah recovered from the caesarean. Sarah stayed in hospital for 5 days following which she spent six weeks travelling every day to be by Sophie’s side. It was one of the longest periods of our lives and both of us were emotional wrecks. We both cried daily until she came home. After only two short weeks Mark had to return to work as his paternity leave was finished.

The day Sophie came home was exciting but daunting as we now had sole charge of this little person with none of the monitors and support we had been used to over the last six weeks. Around that time Mark’s work sent him to Ireland for a few weeks. He had no paternity leave left and had used his vacation. There was no option for him to stay at home with Sarah. As a result, Sarah was left on her own looking after a premature baby and felt unprepared, exhausted and alone. When they sent us home Sophie was now a relatively normal new born baby – needed constant feeding and changing. Yet we felt as if we had fallen into a parental leave loophole.

As we raised Sophie we were incredibly conscious of every milestone. No one could tell us if our child would have developmental difficulties. In fact, there were some indications from brain scans that she might – but we would not know for sure until a MRI scan at 12 months. Suddenly, those first months seemed every more important so that we could give Sophie every chance of recovery. Midwives were telling us that breast was best for as long as possible. Every book was telling us to engage in every way with our child to help her develop. The health visitors at the hospital had told us that we needed to give her extra affection to compensate for the weeks in an incubator. All good advice. All impossible to achieve when you are back at work and unable to be with your child for the full maternity leave because you had to start it early but could do little more than peer through the incubator glass. Like so many parents, because Sarah’s maternity leave began at actual birth, not at corrected birth, we were unable to spend as much time with her in that six to twelve month period as other mothers. Even though every medical professional was telling us that our child probably needed support even more than others.

We also noticed great variability in support for parents of premature babies. In the hospital we always found excellent clinical care. But we also found that some staff simply ignored Mark when updating us. The expressing room in the hospital had clearly seen better days and served to depress Sarah’s spirits even further at times – not what was needed when breast milk is so important for premature babies. When we were out of hospital in the community we found an excellent health visitor who came frequently to support us. But we also found health visitors unable to calculate corrected age and insistent as they clearly incorrectly plotted weight versus age. In short, we felt there was a range of improvements needed for premature babies relating to better technical training for community staff, better understanding of the role of fathers and general improvement in empathy for the emotional journey that parents are on.

Thankfully Sophie had a clear brain scan at 12 months. All she has been left with is a squint – not bad for someone who nearly died and it was suggested we terminate.

We are supporting the smallest things campaign as we want to make things easier for other families who find themselves in the same situation in future.

Mark and Sarah are supporting the Smallest Things petition to extend maternity leave for mothers of babies born too soon. If you agree, please support and SIGN our petition too – SIGN NOW!

Sophie ii

 

 

 

 

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!