Tag Archives: Maternal Mental Health

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.

 

 

 

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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.

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!

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

 

I’m signing because…. “Time is precious when you have such a little one.”

Thousands of you have been telling us why you are signing and supporting our petition to extend maternity leave for mother of babies born too soon. Here are just a few examples of why you are signing and why you think it is so important for mothers of premature babies to have more time. Please take a little time to read x

“Because 2 months sitting in a hospital isn’t maternity leave. Anyone who can’t afford to take a long time off work faces losing precious time at home with their children because they can’t afford to take more time and have spent the time they could afford sat next to an incubator, unable to hold or even touch their own baby for large parts of that time.”

“I have had a premature baby i feel robbed as I cannot get to see him daily and my pregnancy was cut short so returning to work early would just be extra heartache!”

“My son was born at 25 weeks (15 weeks premature). We spent 5 months in hospital before we could bring him home. Even since he’s been home he has needed multiple operations and we have been restricted on what we can do due to lowered immunity. He is still oxygen dependant and I have suffered from anxiety disorder as a result of everything. I have to return to work due to financial strain as my husband is self employed. To have a longer maternity leave would mean I could spend the time with my son I never got for the first 5 months. A time which isn’t dictated around hospital stays/visits. To just be a normal mum.”

“My baby was 16 weeks early and have to travel 60 miles to Nottingham to see him we have been there 115 days and still waiting to get closer to home this has been the most stressful journey and mums who have prem babies need extra time off as their journey of being a mum hadn’t begun until they get home.”

“My son was born 11 weeks early..as well as worry about my son..extra worry about finances was awful.”

“We had a baby born 11 weeks early and it crippled us i lost my job because of the time i had taken off. We racked up huge debts on credit cards and 9 months on still struggling immensely to keep a roof over our heads. Something needs to be done to help other familues going through such a traumatic time.”

“I had a premature baby, the time spent in scbu is not the quality time other mothers spend at home with their children. Our time at home doesn’t start for weeks, even months later- we have been sitting next to incubators willing our babies to get better while babies born to term are being cooed over in their prams. Our babies often have health issues that continue after they leave hospital which means poorly spells and hospital visits which all eat into our precious maternity leave. Let’s make this fair!!!”

smallest things“I’ve seen at first hand the impact of having a prem baby as I work in a neonatal unit. The real bonding process only starts properly once the baby goes home.”

I’m signing because, “Time is precious when you have such a little one.”

If you agree please sign and share our PETITION to extend maternity leave for mothers of premature babies – SIGN NOW!