Category Archives: maternity leave

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!

 

All planned out – why NICU mums need more time

I had it all planned out; I would wind down work slowly, finishing Christmas Eve.

I was beginning to feel relaxed and confident in my pregnancy, daring to think about what life would be like once the baby was here. I had finally agreed a date with my friends for a baby shower, totally unaware that a week later I would go into labour.

One morning I decided to go to hospital after experiencing a few pains through the night, with a show of blood. Shortly after arriving I was told that my placenta was hanging on by a thread and I was 6cm dilated. My husband and I were told that we would be delivering the baby that day, 14 weeks early.

My son Lewis was born that evening, the 2nd October 9.32pm at exactly 26 weeks; weighing 1lb 12.

The survival rate for the first 72 hours was 50:50.

My maternity leave kicked in the very next day and for the next 93 days my husband and I lived and breathed the Neonatal Intensive Care Unit (NICU). We were in limbo; we were parents, but we could not take our baby home.

Lewis - day one

Lewis – day one

My last trimester of pregnancy was spent watching our little boy grow inside an incubator. I had never experienced anything like it, emotions ranging from sheer grief and helplessness to absolute admiration for this little boy fighting every step of the way. It was an extremely traumatic and stressful time for us all.

With hindsight I can look back on Lewis’ time in the hospital with a fondness. Knowing that I experienced something very special, seeing him achieve milestones that full term parents would never see. I always saw myself as being tough, someone who rolls with the punches, but seeing your baby battle to stay alive with the constant set backs, takes its toll. One step forward, two steps back was considered the norm.

Lewis finally came home 31st December 2014 and the reality began to set in that we had our baby boy home. To begin with, it took us a long time to feel confident in our parenting abilities. We had been ‘institutionalised’ – a direct consequence of being in hospital for 93 days. Knowing that we had the support of doctors and nurses if anything were to happen. Suddenly that support was gone and we were on our own, responsible. Our first night home was absolutely terrifying.

Lewis aged  9.5 months - 7.5 months old corrected

Lewis aged 9.5 months – 7.5 months old corrected

Initially I didn’t think of the impact that Lewis prematurity would have upon my maternity leave. The plan was to return to work in a years time. As time went on, I started to think of the implications of returning work in October 2015 and I began to fret at the thought of having to leave Lewis – I didn’t feel ready at all. All I kept thinking was, what about Lewis, he’s not ready and what about me, I’m definitely not ready.

So what if the maternity leave was extended to allow for the time lost in hospital?

It would have given me time to process the trauma of Lewis being born so early. As that time spent in the hospital unearthed some extremely raw emotions and 10 months on I continue to have reoccurring nightmares. This is my brain coming to terms and processing what has happened.

Time for Lewis. It would allow me to continue to support my son’s 3.5 month delayed development, which should eventually subside by 2 years old. It would allow for extra time that we lost together in hospital, time to reflect and time to embrace what we have.

Extended financial support through the extension of Statutory Maternity pay. Giving mothers of premature babies a choice, not feeling pressurised to return to work, or indeed having to give up work because of the financial implications.

Fortunately my company has allowed me to take a 4 month unpaid career break, giving me this extra time, however financially we will be worse off. This additional time is important to me and important for my son, but this option is not widely available and may not be possible financially for many families. This is why I believe in the extension of maternity leave for families in neonatal intensive care, taking into account individual circumstances and giving time and the financial support to take that extra time if needed.

Guest Blog by – Jessica Hayler

If you agree, please sign our petition to extend parental leave for families in neonatal intensive care – SIGN NOW!

A – Z of NICU!

 CDHHLLmWYAAyDSF

A – Amazing: All premature babies are quite amazing, as are their parents and the staff who care for them 24/7.b

B – Breast Feeding: Establishing breast feeding in the neonatal environment can be tough; but putting a baby born too soon to the breast is also a big moment for many NICU mums who wait days or weeks for the opportunity.

C – Corrected Age: A baby’s age calculated according to their due date rather than their birth date, the date at which milestones and weight should be measured against.d

D – Dates: Birth date, due date, leaving hospital date – dates can be significant for parents of children born prematurely. A birthday will always signify the day your baby arrived early and the lead up to celebrations can be a reflective time for parents.

E – Expressing:  The three hourly cycle of pumping to produce breast milk for your baby in neonatal care.f

F – Family & Friends: There to help and support you, but friends and family may feel helpless or left out. Ask them to help with practical things, such as buying micro-nappies, cooking a meal or helping with childcare. Take advantage of offers of help, but allow time for yourself.

G – Going Home: Sadly not all babies leave hospital, with some born too small or poorly to survive. They are always remembered.  For parents who do bring their babies home from NICU we know they face a host of mixed and often conflicting emotions…. relief, joy, anxious, scared.h The journey rarely ever ends at dischage.

H – How old is your Baby?  The question every parent of a baby born too soon dreads. “They’re six months… but they were born early…so really they are only 3 months”, you hurriedly explain.

I – Incubator: Your baby’s home, keeping them warm and safe from the outside world. A place where you will find a parent sitting, watching and waiting.

jJ – Jealousy: Suddenly there are heavily pregnant women everywhere you look. Proud fathers carefully carrying car seats are around every corner and your Facebook timeline is seemingly full of mums cuddling their newborns whilst you wait anxiously for your first hold.

K – Kangaroo Care:  The act of skin-to-skin care beneficial for both baby and mother.

l'L – Loss: Loss of pregnancy; that final trimester, the lost time to prepare. Loss of that first hold or touch as your baby is taken away to NICU. Loss of a baby to take home, the emptiness that fills you as you leave hospital without them. Lost maternity leave as the weeks are spent beside an incubator. And the loss of a child, for the babies born too soon or too small, who do not come home from NICU.

M – Milk: Those first ‘golden drops’ proudly presented to the NICU nurse in a syringe. Followed by an obsession with numbers – how many mls, how many minutes, how many hours between feeds and expresses.

nN – NICU: An acronym you probably hadn’t heard of before, but now you know every aspect of what the Neonatal Intensive Care Unit means.

O – Overwhelming: Nothing can quite prepare you for parenthood, but for parents of premature babies the planning and expectation of a new arrival is dramatically interrupted. You are thrown into a world of micro-nappies, beeping machines, breathing tubes, feeding tubes, expressing pumps, portholes, picc lines and rigorous hand washing. It is quite simply – overwhelming.

P – Preemie Club: A lifelong membership to a club you would never have wanted to join. Once a preemie parent, always a preemie parent, sharing experiences and feelings only other preemie parents will know.

qQ – Quiet: The neonatal unit is one long continuous wave of sound; bells and buzzers, alarms and machines. Take time outside the unit and outside the hospital to find a quiet space each day.

R – Reason: In 40% of cases there is no known reason for premature labour.

S – SCBU:  Another acronym and a step closer to home. The Special Care Baby Unitt

T – Trauma: The trauma associated with an abrupt end to pregnancy and admission to neonatal intensive care can not be underestimated. Thrown into a medical world of uncertainty and all that it entails has a lasting affect, with many parents desribing symptoms of post traumatic stress disorder after the event.

U – Universal Care: 15 million babies worldwide are born prematurely.

V – Ventilation: To give oxygen to your babies lungs, helping them to breath or taking over their breathing completely.w

W – Wires and Lines: The tangle of wires and lines that cover your tiny baby – cardiac monitors, respiratory monitors, breathing tubes, feeding tubes, peripheral, central and umbilical intravenous lines…

X – Xtra Special – Whatever your child goes onto do, it will always be that little bity more special.

Y – You – Look after yourself.

Z – Z zzzzz: “At least you can go home and get a good nights sleep”… one of the worst things to say to a preemie mum!

z

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!

 

 

6 Months: Making the Smallest Things Matter

6 months: Time can be a strange concept to a parent of a premature baby.

Timescales sometimes don’t seem to apply to them.

Six months, the length of my pregnancy – that still sounds wrong.

It has been six months since the launch of the Smallest Things.

– Six months of raising awareness.

– Six months of sharing stories.

– Six months where we continue to say, more support for parents of premature babies please!

Setting up our campaign has been a humbling experience; not least through the overwhelming support we have received, but by the wonderful and often amazing people I am coming into contact with. Six months in I offer a huge heartfelt thank you to everyone who has supported us so far, to each and every one of you who have helped to make The Smallest Things what it has become in such a short space of time.

The solar eclipse took place earlier today behind the clouds and for a while darkness fell. As rays of light appeared and the darkness lifted I was reminded of the similar sense of hope felt by parents in NICU. The light at the end of the tunnel, the light as you edge closer to the NICU door and the light as you hope soon the NICU experience will become a distant memory. Sadly though not all babies survive their 1st picvery early start; born too small or too poorly – but mothers like Hugo’s mum Leigh inspire us through #HugosLegacy, becoming a ray of light for others surviving baby loss and reminding us how amazing ALL premmie babies are.

Of course we know that for many, despite the hope, NICU does not become a distant memory. Indeed the sounds, feelings and emotions can stay with parents of premature babies for years to come. Sarra Hoy describes beautifully her own journey in neonatal care and her membership into the ‘premmie mum club’; a life long membership for her, yet a determination that her son will not be defined by his early start.

smallest thingsFinding yourself to be part of ‘the premmie club’ has been a welcome discovery for some, with mothers visiting our site and for the first time recognising their own story in our words – “it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amongst prem baby mums!”.

There have been lots of positives to our campaign so far, like the politician who supports our campaign to extend maternity leave for mothers of very premature babies “In such a crucial time for families, it makes sense to support extended maternity leave for parents of very premature babies” or the hospital chief executive who has agreed to review their car parking charges and policies for parents of babies in NICU … but it is the smallest things that matter and if just one mother has found that her feelings of loss and grief are common and indeed a ‘normal’ part of the NICU process, or if just one mother recognises the symptoms and feelings of PTSD or anxiety and seeks help, then 6 months as the Smallest Things has made the small things matter.

Time can be a strange concept to a parent of a premature baby.

Launching on the 20th September, picked as a special date, the date on which we brought our first son home from hospital. Six months later, how old would he be?

– Eight months, his chronological age?

– Five Months, his corrected age?

How old is your baby – the question every prem parent dreads!

Parents of premature babies may also recognise our sigh of relief that we’ve made it through the winter – through the beautifulcough and cold season! With spring on our doorstep we now look forward to the next six months in anticipation.

– Six months of raising awareness.

– Six months of sharing stories.

– Six months where we continue to say, more support for parents of premature babies please!

 

Maternity Leave Matters – 95% Agree!

First hold, day six.

First hold, day six.

I had no idea that mothers could spend weeks, sometimes months of their maternity leave visiting and attending to their sick and tiny babies in hospital. I had no idea and no reason to know… until it happened to me.

‘You’re maternity leave will start tomorrow’, the hospital support worker told me.

I was standing over an incubator at the time, just hours after giving birth suddenly and with little warning.

At breakfast time I was 30 weeks pregnant getting ready to go to work; now it was lunchtime and I was a new mum – I couldn’t quite take in what she was saying.

I was meant to be at work right now, but instead I was leaving the hospital empty and without my baby.

The next day my boss emailed me – ‘Congratulations!’ ‘HR say your maternity leave will begin today’. 

Could that really be true? It must be; it was written in front of me in black and white – but it was still difficult to believe.

Smallest ThingsI’d planned to spend nine months at home with my baby… and now the hospital tell me he’s likely to stay here for 2 and a half months…

When would I be able to catch up on that precious time missed?

Maternity leave matters for mothers of premature babies – That’s why when we asked “Should maternity leave be extended for mothers for very premature babies be extended?”  more than 95% of people responded yes!

mat leave poll

We’ve written before about the need to extend maternity leave for mothers of babies born too soon; the financial cost of NICU, the time needed for mother and baby to bond, the time needed to establish feeding, the time needed for baby to develop and grow and the time needed for mum to recover from what is often a traumatic experience.

This time is already given in other European countries where maternity leave is extended for mothers of premature babies and we will continue to campaign for this much needed change here in the UK.

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?

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!

Extend mat leave for mothers of premature babies!

cropped-cuddles.jpgEach year in the United Kingdom 80,000 babies receive specialist NHS neonatal care, with approximately a quarter spending a prolonged period of time in hospital. Parents of premature babies often describe their hospital journey as a physical and emotional rollercoaster. I have been on this rollercoaster and write about my experiences as part of our Smallest Things campaign. But there is also a very real cost to having a premature baby.

Earlier this year, Bliss reported on the added financial burden placed on parents of sick or premature babies. Be it travel, parking, accommodation, extra childcare or meals, the cost soon adds up, with figures suggesting that parents spend on average an extra £2,256 over the course of their hospital stay. Through my own story and the Smallest Things we are calling on UK government to extend statutory maternity leave and statutory maternity pay for parents of babies born prematurely.

A newborn needing prolonged hospital care is unlike any other childhood illnesses requiring hospitalisation. There is virtually no financial support for parents of premature or sick babies. Being in hospital you cannot apply for the disability living allowance and the flexibility of taking paid, unpaid or sick leave from work is not possible as maternity leave begins automatically the day after birth, in many cases weeks or months before a baby comes home.

The interruption of pregnancy and the uncertainty and loss of time preparing for your new arrival all add to the anxiety of life in neonatal care. The cost of daily hospital visits and concern over whether you can afford to be with your baby should not add to this difficult time. Getting over the initial shock parents describe how the hope of bringing their baby home can turn to anger and sadness that their time at home together will also be cut short. In context, 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.

In addition, premature babies are babies for longer. Born early they develop according to their ‘corrected’ age, calculated according to their due date rather than their birth date. This sees parents returning to work when their babies are still physically and emotionally less developed in comparison to babies born on or near their due date. This can be a worrying time for parents, particularly when a baby is still small or has ongoing medical concerns.

sam photoStudies also confirm 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. The added financial burden of a long hospital stay or limited time to bond with your baby at home can only exacerbate the risk. Extending statutory maternity leave and pay would enable mothers to have the emotional and financial support needed at a time of great trauma and stress, in turn leading to better postnatal health, a more positive return to work and better outcomes for baby’s development.

Is change is possible? YES, and the precedent has already been set. European countries such as Finland, Iceland and Croatia are all offering extended leave for parents of premature or sick babies. If you agree that mothers of babies born too soon should have more time, please sign and share our petition – SIGN NOW!