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.

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.

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.

 

 

 

Launching! Recognising the Mental Health needs of NICU parents

“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.

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.

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?

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.

 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.

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.

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.

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