Tag Archives: PND

Bonding with Alfie after the Trauma of Premature Birth

My son was born at 26 weeks.

Up until that point my pregnancy had been very similar to that of my daughters three years earlier. I had constant morning sickness so was medicated and felt pretty awful most of the time, but I’d carried Sally to term and had a natural birth with a wonderful outcome so saw no reason why this time anything should be different.

Alfie arrived very quickly without any real warning. He came 17 minutes after arriving at the hospital by ambulance and my husband was unable to be there as he was arranging care for our daughter.

I went into complete shock.

I wish now that we’d known Alfie’s gender beforehand, he was born with his placenta attached and even the vast medical team didn’t know his gender for 10 minutes as they worked to stabilise him.

I coped by detaching. I can still vividly remember and feel guilty everyday for the fact that during his rapid birth I focused on our daughter. I pictured her in my mind and reminded myself whatever happens I’ve got her. My mind continued to cope by focusing on her for at least the first 48 hours.

Alfie was transferred to a specialist hospital 60 miles away and we followed. I’d never left Sally over night before so was tormented by thoughts of her distress and just wanted to get home to be with her, but when I did the following day I felt judged for doing so by all but one wonderful nurses.

I returned within 24 hours and continued to do 48 hours with Alfie followed by 24 hours with Sally in shifts with my husband until Alfie was transferred back to our local hospital 18 days later.

I had bonded with Sally instantly when she was born, but she as been handed to me the second she was born and had barely left my arms in the days, weeks and months that followed. I got to touch Alfie’s tiny, tiny hand briefly as he was whisked away and then all contact was controlled, monitored and terrifying. Even the first time I held him after 13 days was hard as my instinct was to rock and stroke him but that was not allowed.

I tore myself in half to spend time with both of my children everyday but never felt I was giving either of them enough. When Alfie finally came home along with his oxygen my body and mind caved in and I suffered severe stress induced IBS and debilitating anxiety, not helped by him being readmitted with pneumonia and a collapsed lung 5 weeks later.

I struggled on exhausted and carrying the guilt that I had not bonded with Alfie straight away until I went to see my GP as I reached breaking point. To the outside world I hid it well, but that is not always a good thing. She got me counselling which identified that I had PTSD and post natal anxiety. It helped but I was still struggling and in the end agreed to try medication and wish I’d done it months ago. I still get anxious but I can manage it now and my IBS has reduced massively. I can look at things rationally now and know deep down that what matters is that I have bonded with Alfie not how quickly that happened.

I still feel haunted by his birth and first year of life, but I know now that I’m not alone in these feelings and that helps a lot.

The NICU experience does not end at discharge and everyone copes in different ways, but just because someone appears to be coping do not assume they are and just be there to listen and support.

Lizzie Miller

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.

 

 

NEW! – “Preemie Proud” Red Book Stickers

Every year 80,000 babies are born requiring specialist neonatal care services in the UK. Their parents face a turbulent journey, often physically and emotionally exhausting and for many it is a journey that will have a lasting impact. I have written about my own experiences as a preemie mum, raising awareness through The Smallest Things campaign about a journey that rarely ends at the NICU doors.

You find yourself waiting to see the health visitor, waiting to have your little bundle weighed.

Sitting in line, waiting your turn, you could be mistaken for any other new mum – a mum who has recently given birth, a mum holding their new baby close.

And yet you’re not a new mum; you gave birth months ago and your ‘new’ baby has already been around the block. You’re already a pro at changing nappies (albeit through incubator portholes) and you have had weeks and months more sleeplessness nights in the bag.

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You remind the health visitor that your baby was born early and as they go to chart their weight you gently remind them about plotting their weight according to their corrected age.

Your baby is 10 weeks old – “Are they smiling yet?” they ask. You shake your head, you’ve been asked this question before.

“He hasn’t reached his due date yet” you reply.

They may not be smiling yet, but your baby has just doubled their birth weight… that’s pretty awesome!

“How are you getting on?” they ask.
“Okay,” you reply quickly, afraid that if you linger on the subject you may break down and cry.

How can you explain that every time you pass a heavily pregnant woman you feel a pang of jealously?

How can you explain that you are still grieving for the loss of your third trimester, the loss of the first precious hold, the loss of a ‘normal birth’ and the loss of weeks, if not months, of your maternity leave?

Do you open up about the flash backs, the worry, the guilt and exhaustion?

How do you begin to explain the pain of having to leave your baby every day.

Smallest Things

As a sympathetic nod to the journey you have been on, a well-meaning health visitor notes that “NICU must have been hard, ….but you’re home now”.

This plays into the common misconception that once you are discharged home from neonatal care your NICU journey is behind you; but for parents of premature babies this is far from the truth.  For instance, we know that 40% of mothers who spend time in NICU experience post-natal depression, (compared to 5-10% of mothers who deliver with no complications at full term); and that more than half of mothers report symptoms of anxiety and post-traumatic stress disorder once their baby is home.

Health visitors, with their specific training, are in a unique position to support the families of babies born prematurely. That is why The Smallest Things are delighted to be launching our new “Preemie Proud” Red Book initiative; a series of stickers that families can use to personalise their baby’s red book. Stickers that will act as a gentle reminder that this mum has been through NICU and may need some more support. Stickers that provide a prompt to use a babies corrected age on their growth chat; and stickers that can form the basis of an initial conversation about the lasting needs following neonatal intensive care.

 

 

 

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Launching! Recognising the Mental Health needs of NICU parents

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

Haruki Murakami

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NICU and my PTSD

Nothing can really prepare you for parenthood; but for parents of premature babies the time to plan and the anticipation of a new arrival is dramatically interrupted. Plans to decorate the nursery and dreams of holding your baby close for the first time are shattered as shocked and numb you find yourself in the neonatal intensive care unit (NICU).

Neonatal intensive care – a scary sounding place and one you are unlikely to chance upon. As it happened I had worked in neonatal care as a children’s occupational therapist and yet when my own son was born at 30 weeks I found myself lost in a medical world I did not recognise. For eight weeks I visited my baby every day, trying to become a mother in a unit where rows of incubators housed babies at the very edge of life. All around me monitors beeped and alarmed as they seamlessly chimed with the uncertainty of our journey.

Given the nature of NICU – the pain of leaving your fragile baby each day, the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand washing – it came as no surprise to me that parents who have experienced premature birth are at greater risk of post natal depression, anxiety and post-traumatic stress disorder (PTSD). In fact, it is thought that more than half of mothers are affected by anxiety and PTSD following NICU and approximately 40% (compared to5%-10% of mothers who give birth at full term) develop post natal depression. And yet, despite these statistics, there is little talk of the mental health needs of parents following NICU and the 2015 Baby Report by neonatal charity Bliss highlights the lack of psychological support for parents in hospital.

I can still recall the moment I first felt panicked and sick with PTSD; I was returning to the neonatal unit for a routine 4 week follow up. Walking out of the car park and into the hospital I could hear and feel the sound of my heart pounding in my head. I could hear the beep, beep, beep of monitors and the motion of the ventilator as air filled my son’s lungs. If I closed my eyes all I could see were wires and the mechanical rise and fall of his tiny chest. I felt sick to the bottom of my stomach and although I felt as if my body would completely shut down there was nothing I could do to stop it.

No one warns you about the flash backs and PTSD often presents itself after the acute phase of neonatal care when you are alone. The support network of the hospital can disappear overnight and you are left to wonder how on earth you made it through. Family and friends with good intention assume that the difficult times are behind you and the idea that discharge would be the end of your neonatal journey suddenly seems farcical.

The usual routes where a mother may seek support are often closed to mothers with premature babies. Clinics or parents groups can be out of bounds due to the infection risk to premature lungs and mum and baby groups can lead to a host of well-meaning questions that instead exacerbate negative feelings or bring back painful memories. “The longest hour of my life” is how one mother recently described an NCT group, “I wanted to run and hide” said another. The reality of becoming a mother in NICU is so far removed from the ‘norm’ that mothers become isolated and simply cannot connect with the experiences of other families. Many believe they are alone in their thoughts of loss or anger and remain quiet about the flashbacks or anxiety they experience. On the contrary though, we know that a significant proportion of parents feel this way and I write about my experiences as a NICU mum to raise awareness and to let others know they not alone.

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I hope to see more parents speaking and writing about their experience of life after neonatal care. As a NICU mum PTSD will always be lurking around the corner and it is only by speaking openly and honestly about our journeys that we can raise awareness, educate and call for greater support.

 

 

PM pledges extra support – will it reach prem parents?

The Prime Minister is pledging extra support and will call for a ‘more mature’ conversation about mental health. Specific measures expected in England include – “£290m up to 2020 to give 30,000 more women each year access to specialist mental health care before and after giving birth, including through classes”

This is welcome news for parents of babies born prematurely and families who have spent time in neonatal intensive care. Specialist care is vital for these families with the incidence of post natal depression known to be higher following premature birth and with over 50% of mothers reporting anxiety and displaying signs of post traumatic stress disorder following their NICU stay.

Each year however 80,000 babies are born prematurely and much more needs to be done to support the mental health needs of both mothers and fathers following neonatal care.

Access to specialist mental health care and understanding by primary health care workers will be key to ensure that appropriate and tailored support is given and that timely referrals are made. It is not yet clear however whether the extra funding and support pledged will reach families affected by prematurity and offer the support they need.

For more information on mental health following premature birth please read – PTSD: The hidden cost of NICU

The hidden cost of NICU | Write to your MP today!

On Wednesday 9th December MPs will take part in an opposition day debate in the House of Commons to discuss Mental Health.

The Smallest Things campaigns regularly for more awareness and better access to psychological support following the premature birth of a baby and we know how important this issue is to our supporters.

I have written to my local MP, asking them to attend to take part in the debate and hope you will do the same.

Please feel free to use any part of the letter below.

You can find how to contact your local MP by clicking and entering your Postcode here.

 Dear Mr Reed MP,

I am writing to ask you to attend the forthcoming opposition day debate on mental health with regards to PTSD, the hidden cost of NICU.

When my son was born we weren’t ready. He wasn’t ready.

Born 10 weeks early, he spent an anxious 8 weeks in neonatal intensive care; a stressful environment where parents following the traumatic birth of their babies watch over incubators day-by-day. It is an uncertain and alien world full of breathing machines and beeping monitors. It is a medical and clinical world where you find life at its most fragile.

Not surprisingly mothers of babies born too soon there is a greater risk of post natal depression, with as many as 70% report symptoms of post traumatic stress and anxiety in the aftermath of a premature birth.

Yet in their 2015 baby report, Bliss reveal that 41% of neonatal units have no access to a trained mental health worker and that nearly a third of units offer no psychological support at all.

Parents of some of the smallest and fragile babies need more support, not only during their hospital stay, but also in the months and years that follow.

I, and parents like me, would be grateful if you could highlight the very specific, but often unmet needs of families of premature babies in the forthcoming opposition day debate on Mental Health – Wednesday 9th December.

For more information, please see PTSD: The Hidden Cost of NICU

With best wishes,

Catriona

ST reception

 

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!

 

Once the Storm is Over: NICU & Beyond

imagesCAD2R930“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in” Haruki Murakami

As a parent of a baby born too soon I was often asked in the early days how we made it through NICU. My reply was always the same – you just did, you had to. New mothers would ask how could I leave my baby each day and colleagues would hide their gasps at the sight of our tiny baby hooked up to an array of breathing apparatus. It was here that I turned to Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.

Another quote I see used to sum up NICU is “You never know how strong you are, until being strong is the only choice you have”.

seeing our son for the first time

seeing our son for the first time

It is certainly true that neonatal care tests you to your very limits and that there are few alternative choices; but I don’t remember feeling particularly ‘strong’, in fact often just the opposite. Lost in your emotions you manage – you have to. Thrown into a world that has been turned upside down you hold on through the storm and get through. For being strong was someone much braver and smaller than me – it was the fight in my baby that gave me hope and it was holding onto that hope that kept me strong. It was the kindness of staff that got me through and the parents on the unit who picked me up when I was down.

The sun was shining on the day we left the hospital and I still remember the weight of relief and the sense of ‘it’s over’- those feelings didn’t leave however and very soon I came to realise that the storm had not passed, that the NICU journey was not over. The questions ‘How did you manage in NICU?’ ‘How did you make it through?’ became redundant – you’d made it to this stage because you had to, but I was still battling, still holding on in the aftermath of the storm. The question should have been ‘how are you managing now?’, but there is a mistaken, yet understandable belief that once you’re home the difficult time is behind you.

I like to think of the NICU journey a little bit like the British weather; the storm may settle and the sun may shine, but its course is unpredictable and the scars of its aftermath take their toll. Even on the brightest of days the threat of rain clouds can linger and with four seasons in one day the forecast can change at a moments notice. Memories of the storm last for parents who have lived the neonatal care journey and the weather can remain unsettled for some time to come – Once a NICU parent, always a NICU parent.

 imagesCAD2R930“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in”  Haruki Murakami

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!

 

Time to Talk: PTSD the hidden cost of NICU

#TimetoTalk

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

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

seeing our son for the first time

seeing our son for the first time

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

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

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

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

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

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

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

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

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

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

Of the hot, close, claustrophobic environment.

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

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

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

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