Tag Archives: PTSD

No one told me, no one asked me, no one to support me

In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!

days before the unexpected premature birth

I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!

No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low.  No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.

As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me. 

Isabelle

Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.  

Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out.  No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.

Imogen

10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.

9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting.  So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.

Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change.  Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.

Isobel and Imogen are now 11 years old

With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.

To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.

 

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

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.

 

 

 

mumsnet

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.

PREM

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 Dads do cry

My wife Nina and I were expecting our first baby in 2011 and we couldn’t wait. Nina had had a great pregnancy, and without the risking of using a cliché, glowed throughout. On the 27th May, 11 days past our due date, Nina started having contractions. We had already agreed if we had a boy he was going to be called Ralph, if we had a girl, well, we still wasn’t sure. I drove to the hospital with Nina and Nina’s Mum, Denise.

Labour started well and as expected, however over the next few hours Nina was becoming more and more tired. At 10pm, after 8 hours, the decision was made they would have to cut Nina to get baby out. I was becoming increasingly worried, I felt like it was happening to someone else and I was watching from far away. I tried to comfort Nina, telling her it was ok and that it wouldn’t be long. But she knew things were going wrong, despite the gas and air. Then time felt like it stood still, I could hear the clock ticking but wasn’t aware of what was happening around me. Next thing I knew the midwife jumped-up, shouted something and ran to the wall behind the bed and pressed the alarm. The room instantly filled with people in white jackets, looking concerned and serious. ‘What is happening?’ I asked, ‘what is wrong with our baby?’ I pleaded, but no one was talking to me. I couldn’t see what was happening, there was too many people. Nina was crying, asking where our baby was. I couldn’t answer her, my face stung with tears. Denise cuddled me, I couldn’t speak. Then I saw our baby, we had a little boy, he was out. I felt a pang of relief, ‘if he is out then he must be ok’. They took our baby straight to a machine with a heat lamp over it. He wasn’t crying, why wasn’t he crying, please cry. I could see them lift his tiny arm and it fall limply by his side. This wasn’t supposed to be happening, we were supposed to be taking pictures, holding our baby, smiling like everyone else. Three, four times they lifted his arm, nothing. He had been out for what felt like forever, although in reality is was about four minutes. I was crying, more tears then I knew possible, I was shaking I couldn’t do anything. I looked at Nina, her face pleading with me to help, to do something. I couldn’t do anything to help our baby, all I could whisper was ‘we have got a boy, Ralph is here’. Then I heard a cry, the smallest and loudest sound I had ever heard. Then they started moving the heat trolley he was on, ‘we are taking him to intensive care now’, was all I heard, then they were gone. I looked around, Nina was cuddling her Mum, the floor and bed was covered in blood and the alarm was still flashing.

baby

Nina had to get in the shower and be stitched-up by the nurse, her mum stayed with her, I followed the doctors to intensive care. They transferred Ralph to a large plastic box full of tubes and pipes. He looked so helpless, so scared, I couldn’t even touch him.

During his birth, Ralph had started to get upset and did a poo in Nina’s womb, this is called meconium, babies first poo which is composed of materials ingested during the pregnancy and is very toxic. Ralph swallowed and ingested it during the birth. This caused Ralphs lung to collapse, his kidneys fail and septicaemia (blood poisoning). Ralph also stopped breathing for almost five minutes. When I asked the Drs what this meant, they couldn’t be sure, he was very poorly and lucky to be alive. When I asked about potential brain damage because of stopping breathing, they said again that they couldn’t be sure and he would undergo tests as he improved. I sat next to his incubator watching him, wanting to hold him, concentrating on his little chest moving up and down awkwardly. I went back to see Nina, she was in a wheelchair. I cuddled her and didn’t want to let go. I then looked her in the eye and said, ‘do you want to go and meet Ralph’.

Ralph spent the next seven days in NICU, he received round the clock care from the most fantastic consultants, doctors and nurses. They saved his life, I have no doubt of that. We visited him all day, every day. Going home only to shower, change clothes and sleep for a couple of hours. I would sit next to Ralph’s incubator every night and read him The Gruffalo, my favourite book. We would stay until the early hours, then call at 6 am the next morning to check on him and be there by 9am for the shift change. The week felt like a never ending cycle of cleaning my hands and drinking coffee. The constant beeping and smell of disinfectant kept me awake and served as an on-going reminder of where we were. After three days we were allowed to hold Ralph and after seven days we could take him home. We were so excited to finally get our boy home, but now what? Whilst we wanted to get out of NICU it was a security blanket, what if something went wrong when we got home? What if he stops breathing again?

As Ralph grew older I felt more and more distant, I couldn’t bond with him. I would make excuses to stay at work so I didn’t have to be at home, I became withdrawn. I couldn’t talk about Ralph’s birth, couldn’t even think about it. If people talked about it, I would leave the room. If a TV programme came on showing a baby or someone giving birth, I would leave the room. I felt myself not wanting to carry on with life, feeling more and more helpless. I was obsessed with me becoming a bad father and that I didn’t want Ralph growing up hating me, blaming me for what had happened, why hadn’t daddy helped? One evening in November 2011, I drove home from work through the forest, it was dark and the roads were quite. I was driving at 50mph and I closed my eyes. I hoped a deer was going to run out in front of me, wished it would. I kept doing it. Night after night, praying for a huge crash.

A few months later I had been getting worse and it was affecting my diabetes. I had to go for a medication review. I was with the nurse looking at my details when she said, ‘so Sam, how are you?’ I broke down. I cried and couldn’t stop talking about what had happened and how I didn’t want to be here anymore and that my family would be better off without me. The nurse called for the Dr who came in and saw me immediately, we chatted, I lost track of how long I had been there. The Dr diagnosed me with PTSD, anxiety and depression following the birth of my son and my inability to deal with it and was referred to a counsellor. At first I didn’t believe it, how could I have PTSD? That’s what soldiers suffer from, not people like me. Anyway, surely men do not suffer with it, shouldn’t it be the mum? We need to be strong for our families. I must be weak I thought, real men wouldn’t let this beat them. Real men do not cry.

Four years later I still take medication and find it hard watching the TV showing a baby being born. But I am stronger now, I know that it was a sign of strength me speaking up. I still hear that beeping from NICU in my dreams but now I can deal with it. I look at me beautiful healthy little Ralph and think how lucky we are to have our little miracle boy. I will always suffer with mental illness, that I accept, I will have good days and bad days, days where I want to smile and days where I want to cry. But what I have learnt is that we need to talk to each other and about our experiences. Just because we are men doesn’t mean it doesn’t effect us, yes we want to be strong for our families but what good are we doing by burying it away.

Sam and family

With thanks to Sam for sharing his story.

If you have a story to share, please contact Catriona at e. smallestthings@yahoo.com

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.

 

 

From one NICU mum to another…

Hello, I’m Francesca, and my little boy is Harry-this is our NICU feeding story:

Harry was born at 28w4d whilst I was on holiday in France, weighing in at 2lb13oz. He had no sucking reflex due to his prematurity, so was enteral tube fed via his mouth on a continuous pump (standard for prems in France) for the first few weeks of his life. When we were transferred to a UK hospital, when he was transferred to a NG tube and was syringe fed every few hours.

harry NICU

During the tube feeding, I expressed using the hospital pumps. This was something I hadn’t really thought about, and something I had to “learn on the job” thanks to language barriers, and a slightly different approach than nurses here would have! In addition to my milk, during our time in France he was also fed on donated breastmilk. This was because the hospital would not accept milk I’d expressed outside of the hospital. Unfortunately due to Harry’s prematurity, he was in a high-dependency hospital over an hour from where I was staying, so there were points I was expressing at night whilst away from Harry, and sadly had to dispose of the milk- very demoralising!

Harry was NG fed until he was ready to be fully established on breastfeeding, which was around five weeks before his due date. We had three full days of breastfeeding at the neonatal unit, to ensure he had completely got the hang of feeding – only then was his NG tube removed. Although I was exclusively breastfeeding, our neonatal department wanted to ensure he could also take a bottle, to ensure we could administer medications that were mixed into expressed milk – we found this less stressful for Harry, rather than syringe administration of medication.

Francesca and Harry

Unfortunately, due to further medical complications, Harry needed to be transferred solely onto a premature baby formula about 6 weeks after leaving neonatal, so our breastfeeding finished rather abruptly. I was quite upset by this and did worry about our bonding, but thanks to all the skin-to-skin care we’d had during our neonatal journey, this was not a problem.

Due to the traumatic birth we had, I suffered PTSD (Post Traumatic Stress Disorder), and have since undergone CBT (Cognitive Behavioural Therapy) and surgery, but thankfully Harry will have no recollection of his interesting start to life. But we will explain his incredible journey to him when he’s older, as we are so proud of our little fighter that we nearly lost. Harry is now a happy, healthy 18 month baby, who loves his food and is completely “normal” in his feeding.

Harry - Feeding

NICU and the neonatal journey is a tough one, and phrases as “you’re lucky you got to meet your baby early” do not help! But from one Mum who has come out of the other side, please hang in there. Be kind to yourself, and make time to recharge wherever you can. You are doing a fantastic job, and you’ve got a strength that keeps you going, that you didn’t even know you possess!

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If you’d like to share your NICU story with The Smallest Things, just drop us a line! Contact Catriona at e. smallestthings@yahoo.com

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

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!

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

 

Life After Neonatal Intensive Care

First publisLife After....hed as part of Leigh Kendall’s ‘Life After’ series, posted on her wonderful site – Headspace Perspective: Celebrating Hugo, Surviving Baby Loss, Creating #HugosLegacy.

 

I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it? When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

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

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

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!

 

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

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

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

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

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

So, what is needed?

What can we change on NHS change day?

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

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

All important cuddles

All important cuddles

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

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

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

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

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

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

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

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

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

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

Time to Talk: PTSD the hidden cost of NICU

#TimetoTalk

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

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

seeing our son for the first time

seeing our son for the first time

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

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

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

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

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

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

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

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

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

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

Of the hot, close, claustrophobic environment.

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

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

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

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