Interview with Emma Sasaru – author of ‘Beyond Trauma’

Hi Emma! Thank you for sharing your inspirational and hopeful blog with us. We all change after becoming parents, quite drastically, but how do you feel that going through a traumatic birth changed you?

Going through a traumatic birth completely changed me. Physically it took along time to recover but mentally the recovery has taken much longer. I went from being a confident, out-going person to being a shadow of my former self. I was consumed with fear for my baby and myself and suffered very bad flash backs, panic attacks and anxiety. Often doing normal activities was exhausting and going out became scary and difficult. I suffered with guilt and felt that I was no good to my family just a burden. Somedays were very dark.

What kind of breastfeeding support was offered to you in NNU?

While I was in NNU I didn’t receive any breastfeeding support at all, in fact I had to fight to breastfeed my baby and I was told I would never achieve exclusive breastfeeding. But I proved them wrong and breastfed my daughter for 15 months.

How do you think that a breastfeeding peer support worker helps new parents? What kind of things does your work encompass?

I think that a breastfeeding peer support worker helps a family by giving information and support that enables them to make an informed choice regarding feeding their baby thats right for them. A lot of my role involves providing emotional support, giving reassurance and helping women trust in their bodies to nurture their babies. My role encompasses seeing new parents antenatally, on the postnatal wards in hospital and in the community for as long as they need support. I personally work mostly in NNU and then with the families when they are discharged home. I also run a support group where families can drop in for support or just a chat. Ive had the privilege of supporting families from those early stressful days in NNU to being happy healthy families. I really cant begin to say how much joy it brings me, I feel so lucky.

What advice would you give to the partners out there currently caring for a woman who has physically experienced a traumatic birth?

To partners that are caring for a woman who has suffered birth trauma my advice would be to acknowledge what has happened to her and her feelings around it. Encourage her to talk about her feelings if she is able to. Reassure her that you are there for her and that you will help in anyway you can. Encourage, commend show compassion and empathy. Emotional support is invaluable, even if it’s just a listening ear or a hug. Realise that there may be things or activities that she may not yet feel ready to do, be patient and show understanding. But most of all listen to her.

What does a postnatal doula do?

A postnatal doula supports families after the birth of their baby with emotional and practical support. We can help with light household duties, running errands and helping care for other children in the house. We can give support with breastfeeding, and build confidence in a woman’s ability to care for her newborn.

Do you have any words of wisdom for anyone out there who cannot yet “see the light”?

One of my favourite sayings is “I wish I could show you when your in darkness or feeling alone, the astonishing light of your own being”. When darkness is all around you and you feel like it will swallow you up believe that the light will return. Inside us is the strength to overcome even the most traumatic things. We often cannot see our own beauty or the light we bring to the lives of those we love. Hang in there and take each day, be kind and gentle to yourself  and don’t expect to much of yourself. Better days will come honestly.

Thanks again Emma, your blog and honest words are sure to help many of our readers. If you would like to read more about Emma’s experiences, please visit her blog: http://www.lovingbaby.co.uk/

Beyond Trauma: You Can Make A Difference – by Emma Sasaru

We sometimes go through things in life that completely change us as a person. Sometimes it changes things for the better, sometimes the worst and sometimes its both!

For me this is certainly true, when  I had my first daughter and subsequent birth trauma it changed me, in fact it changed not only me but my life. While a lot of those changes were for the worse, my trauma has led me on a path to a place I feel I am meant to be.

One of the main things that kept me sane and anchored after my trauma was breastfeeding, while separated from my daughter in those early days expressing for her while she was in NNU gave me the fight to survive, to continue living and although I could do nothing else for her I could provide her my milk, it was my connection to her, my life- line.  I fought to feed her with every ounce in my body. When staff said that I would never produce enough milk due to my retained placenta and massive blood loss, I fought to prove them wrong. When doctors said I would never exclusively breastfeed her and she most likely would not latch when they removed her NG tube I fought to prove them wrong. Prove them wrong I did and for 15 glorious months my traumatised, weak, wreaked body nourished and provided my baby with everything she needed.

The fight I had to feed my baby with no support and then seeing others struggle again with no support drove me to wonder why, it lead me to finding the breastfeeding network, training with them, volunteering and then eventually working for the NHS as a paid breastfeeding peer support worker. To do my job I had to overcome a lot of my issues as I work on the ward and in the NNU where I had my trauma and where for a long time I couldn’t go. I love my job especially working in NNU. Being able to give moms and babies the support I never had means everything.  When I see the moms sat by their little ones incubators I remember those feelings well and how just a friendly face, a kind word and someone to talk to is often all thats needed and how it can make all the difference.

Without my trauma, without my time in NNU it would be an unknown world to me. Without my struggle, my fight to breastfeed, would I ever have trained to be a breastfeeding support worker? I just don’t know. Yet I do know it is where I am meant to be, it gives me so much, I feel so privileged to do my job to see the difference it makes to families, to support them and be part of their journey. Yes my struggle was painful in many ways but without it maybe I wouldn’t be doing my job and be reaping all the joy it brings me.

My trauma and subsequent struggle to get help for PTSD was very painful and a hard fight for many years.  When I reflect on the struggle I have realised with time that it has been a fight that has given, as well as taken away.  It has given me the determination to try to help others who have also had birth trauma, reaching out to offer support both in my work but with charities and through social media.

My experience drove me to train as a doula and postnatal doula which not only taught me that birth can be a positive experience and helped me in my healing but also how to support moms to help them understand how they can trust their bodies and work with it to make birth easier and more safe.

My trauma and struggle to get help also drives me to want to change things.  I feel that experiencing the bad has given me something special, a voice!

This voice is able to speak out and sometimes shout loud about the need for things to change, both in the culture of birth and postnatal care but also the need for more support for perinatal mental health.  I will always seek to use that voice to speak up for those that as yet are unable to speak up, to raise awareness of what trauma is and try to make sure things change and improve in the care of women in birth.  I will also use that voice to speak out about the importance of proper diagnosis and support for when things may go wrong. Recently I have been able to do this as part of the NHS maternity experience campaign that are striving to improve and change the care given to women at birth and also on twitter to raise awareness of birth trauma and perinatal mental health. I feel privileged to be a voice for those that need support and help health professionals see how they can improve their practice.

Yes I truly believe I am where I am meant to be!

Sometimes bad things happen to us yes, but we can turn those experiences into opportunities to help others, change and improve things and give a voice to those that need help and support. Yes even trauma can lead us to something good, it provides us with a chance to make a difference and in turn helps heal ourselves.

Interview with Amy Dear – author of ‘We Need to Talk’

Amy, thank you for sharing your story with us. Your aftercare sounds very similar to mine: flippant, basic and uncaring. Looking back, what do you wish the midwife who answered your call had said/done?

It was very uncaring, and it didn’t need to be! When I had my second the aftercare was amazing and it’s crazy what a difference that can make. With my first I was just left alone and scared. I wish the midwife had just been kind – asked if I was okay, or if I needed to talk. Someone to talk to would have helped a lot.

How did it feel to be put on medication for PTSD?

It was a relief because it really did help. I didn’t think it would but it helped keep me calm while I worked through the underlying problems – and helped me sleep!

Did your therapy help?

 

Yes, although I only had a few sessions. It helped more being told why I felt the way I did, and that there was light at the end of the tunnel – that I wouldn’t always feel that way. And also that it wasn’t my fault. I felt very much like I’d done something wrong, or failed in some way at giving birth if that makes sense? Therapy helped me realise that it was the medical professionals who ha failed me, and that I had done nothing wrong. Sometimes it’s just nice to hear that.

As a fellow sufferer, I know how important it is that we work together to remove the stigma, but how do you go about doing that?

Talking about it. We need to be open. I try to be honest with other Mums, especially when I talk about my labour and how I felt – not the gory details of course! But I tell them the truth, and the emotions I had, and why. I think if everyone was honest there would be less pressure to fit into a ‘perfect mum’ stereotype. When I tell people I had Post Natal PTSD they sort of pause, and don’t know what to say. I’ve definitely felt judged. It’s a bit sad, but it’s only by being open about our experiences can we help other sufferers, and stop other people being judged in the future.

 

Finally, how do you feel now?

I feel great now. I mean I have nightmares, I’ll be honest – and I still can’t watch medical shows, or shows about birth or pregnancy. I think those will always make me feel uncomfortable. But I can talk about my own labour, and accept how I felt. I have a wonderful, kind and supportive partner who has been with me throughout. I have two beautiful children. I’m volunteering for PANDAS which gives me a lot of purpose and drive outside of my ‘Mummy’ life. I have hard days, like any Mum, but honestly? I feel great. 

Thanks again Amy for sharing this with us.  If you would like to read more about Amy, please take a look at her blog: http://hgtt.wordpress.com/ or you can email her at: hgttblog@gmail.com

We Need To Talk by Amy Dear

My first labour was not what I had expected.

I tell people this, and they all smile and nod, and tell me ‘Yes, childbirth is difficult!’, and they probably think I’m very naive. I’ve almost given up explaining it because – apart from those few women you read about who have 1 hour home-births, with herbal tea and acupuncture and foot rubs – who has an easy labour? How selfish must I seem, acting like I’m the only one?

I had a difficult labour. Both my son and I struggled. Physically I wasn’t able to give birth unassisted, so I had an urgent forceps delivery after more than 24 hours in labour. Basically, it lasted a long time, I lost a lot of blood, I had a lot of stitches. I also had all the painkillers they could give but the epidural wasn’t working well, and with that cocktail of drugs I had no idea what was happening most of the time. For several hours I knew only that I was in pain, I was afraid, and nothing was happening the way we had been told.

In short – I was terrified I’d gone from a problem-free pregnancy to a traumatic labour, and I no longer knew what I was doing. And worst, when it was over, my son was taken from me straight to neonatal. I held him for what felt like less than a minute before he was put in a plastic crib and wheeled away. My heart broke.

Roman 

We forget sometimes that everyone’s experience is different, and personal, and entirely within their own head. I’m sure the doctors were pleased with how my first labour went. I’m sure they congratulated themselves on another job well done – baby out, mum stitched back together, another free room on the ward. Why shouldn’t they be pleased? I smiled, and said my thank-you’s, and apologised for swearing. I said all the right things and did all the right things. And when my partner had gone home and the lights were out on the ward, I shook. I cried. I wailed into my pillow. In a blind panic I pressed repeatedly on my call button, and a blank faced midwife came to the end of my bed and stared at me until the worst of my shaking had stopped. She eventually asked if I needed anything. I apologised for calling.

I was treated for Post Natal PTSD, when after a month my nightmares and flashbacks and anxiety hadn’t stopped. I was given tablets, a few sessions of therapy, but most importantly I had an explanation. My labour had gone wrong, and that wasn’t my fault. I had been ill; my son had been in distress; I wasn’t in control, and I had every right to my feelings. That was important to me – that it was okay for me to be afraid.

I have two gorgeous boys now; Roman my eldest, and Eli my youngest. My second labour was such a different experience I could hardly believe it. I fell pregnant again when my Roman was four months old – and only found out I was pregnant after I suffered a Pulmonary Embolism. And as scared as I was about going through labour again, I was so excited to complete our family.

The labour was hard – physically identical in terms of complications, duration (and pain!!); but emotionally? Poles apart. To you reading this, please know – It can be done, you can survive this, you can go on. You can do anything.

Eli 

But we need to talk about it – we need to remove the stigma. We need to understand the difference between a ‘hard’ labour and a ‘bad’ labour. I’ve known mums too ashamed to tell me they used pain relief, or embarrassed of how frightened they were, because we live in this awful ‘norm’ of competition and mum-shaming and a constant fight for perfection. It doesn’t exist, and we need to stop pretending.

When I was in hospital after my second labour, snuggled up in my narrow hospital bed with Eli (catheter in, IV in, let’s not make it sound more glamorous than it was!), I heard a woman on my ward crying in the night. Softly, but I heard her. I wish I had asked if she was okay. I hope it was just shock and emotion and hormones, because I hate to think of someone else feeling as terrified and alone and violated as I felt on my first night. I hope she told someone if she wasn’t okay.

Please tell someone if you are struggling. Please talk about it if you feel alone. And please be kind to one another. Everyone is fighting their own battle.

Amy’s Blog, ‘Haven’t Got The Time’, is at: https://hgtt.wordpress.com/

You can also email Amy at hgttblog@gmail.com

Interview with Alex, author of Life After NICU: PTSD

Hi Alex, thanks for sharing such an honest and open account of your experience of pregnancy and childbirth.  It must have been so difficult to keep going when so much was happening to you and your family, what gave you the strength to carry on?

I found the strength to carry on because of the love I felt for both my partner and for my son. I could see that my struggles were having an impact on my partner, and he was unsure of what to do or say to help me. I knew that after all that my son had been through he needed his Mummy more than ever, and I needed to be as healthy as possible. And to be honest…I missed the old me. 

Aside from CBT and your thought diary, was there anything else you did for therapy? (I.e. art, online education courses, meditation)

Aside from CBT and my thought diary, my own personal form of therapy was writing poetry. I regularly sat down and just let my thoughts turn into scribbles on a paper about all sorts of topics involving my son, I.e little milestones be had reached in NICU. I also found that keeping his baby book as up to date as possible was a lovely way of cementing that bond if I was ever questioning it. 

What advice do you have for any of our PANDAs who are in the midst of PTSD?

The advice I would give to any PANDA member suffering with PTSD, would be to not punish yourself. It doesn’t make you weak. PTSD is usually as a result of an event that nobody should ever have to experience in their lifetime. It is a natural response. Don’t hate yourself, and believe that you will get past this. Set mini goals everyday….even if it is as simple as putting the bin out on your own or walking to the shops. Don’t try and run before you can walk. 

What advice would you give to someone who suspects they might be experiencing abnormal levels of anxiety?

If anyone suspects they are suffering from extreme anxiety, I advice them to make a note of when and where these episodes happen…in an attempt to find a pattern. Don’t think you are going crazy. Seek help, as its a lot more common than you might realise. Talk to your GP, that first step is a huge one but it will put you on the track to recovery. 

How did PANDAS help you?

The PANDAS online support group was of massive help to me. I had nowhere to turn, and like many others I didn’t want to burden my family and friends. I wanted to maintain that strong front I had mastered. I could speak to others going through the same ordeal as myself, without fear of judgement . The volunteers even took time out of their busy lives to message me privately if I was ever having a bad day. 

And finally, what positives, if any, have you and your partner taken from your experience?

The main positive that we have got from my experience is that we will never take for granted a single moment with our son, as we know how hard we all fought for this family unit. 

Many thanks Alex for sharing your story with us.  Your courage, strength and bravery truly is astounding.

If anyone would like any support or advice from the PANDAS Foundation, please take a look at the PANDAS website for the best way to get in touch: http://www.pandasfoundation.org.uk/how-we-can-help.html

Life After NICU: PTSD by Alex

Pregnancy. Labour. Motherhood. Every word fills you with hopes, dreams and expectations of what your experience is going to be like. When plans go off the rails in a spectacular fashion, it will be a challenge ensuring that you don’t too.

November 13th 2013, the day that changed mine and my partners lives forever when we found out that we were expecting our first child. Like every Mummy and Daddy we were a mixture of excitement and terror all rolled into one! We stocked up on pregnancy books, vitamins and started thinking about baby names. But that all changed at 8 weeks pregnant…

I began bleeding heavily. Suddenly the questions of “would we have a boy or a girl/who would they look like”, were replaced with “was I miscarrying/was our baby going to survive?”. The hospital thought I had a uterine abnormality, which would subsequently significantly raise the chance of miscarriage, late miscarriage, still birth and premature birth. From that moment on, the fun and excitement of pregnancy was snatched away and would never come back…and was replaced with anxiety and fear. I will forever be bitter about that.

The pregnancy progressed slowly but surely, and it seemed that every appointment threw up another problem and worry to contend with. At 20 weeks I was diagnosed with hydroenpherosis , swelling of the kidneys. And at 26 weeks we were told that our baby was significantly smaller than he should be, and wasn’t even reading on the chart. Growth scans were arranged and we just hoped and prayed that our little one would grow bigger and stronger as time went on.

15th May 2014. At 29+6 weeks pregnant, our little man went quiet. I didn’t feel a single kick or movement for over 12 hours. I found myself in denial…he would be fine in another hour. The hours ticked by and by 11pm my partner was urging me to get checked out. So off to the hospital we went.

We can’t have been there any more than an hour and it soon became apparent that this was an emergency. Our little man’s heart rate was ominous, slowing down to virtually nothing, he had reduced liquor and was diagnosed as having IUGR. He was dying inside of me. We were rushed to theatre, where I was to have an emergency caesarean.

May 16th, at 1.49am our gorgeous little boy entered the world. I felt numb. This wasn’t how we had dreamt it. Daddy didn’t cut the cord, Mummy didn’t get first cuddles and first nurse. Instead we had the haunting silence. Our son was being rescuscitated. In those moments I prayed harder than I ever had in my life, to Jesus, Allah, Buddha…anyone who would listen to me. Our boy just couldn’t die.

After what felt like an eternity, we were able to have a glimpse of our little boy before he was whisked away to the Neonatal Intensive Care Unit (NICU). I was a broken woman. One moment I was pregnant and the next I had my baby ripped away from me, along with all of our hopes and dreams of our perfect delivery. I couldn’t keep him safe anymore, like his Mummy should be able to do.

I was taken to a ward full of mothers and their babies. All around me I watched as mothers nursed their little ones, when all I had was a breast pump- which I would chain myself to for the next four months. I felt as though others were looking at me, and judging…”what has she done wrong”. My arms were physically aching to hold our son, knowing that instead he was curled up in a little box all frightened and alone without his Mummy. I cried until I had no tears left.

12 hours later we were able to see and hold our son properly for the first time in his life. My reaction shocked me to the core. All the bleeps and whistles, the heat from the incubators, the blue lights from the UV machines…it was overwhelming. I looked at our tiny 2lb 15oz son, tracking all the wires and tubes coming in and out of his fragile little body. His chest heaving for breath, his little face wincing in pain.

As the nurse placed our son on my chest I was petrified. My hand was the size of his tiny little torso, his eyes were almost fused shut. He should have still been inside of his Mummy, all safe and warm. What if he hated me? Or worse…what if he didn’t even know I was his Mummy anymore? I felt like I had failed before I had even begun, and that our Mother-Son bond was shattered beyond repair.

Looking back now, I know that subconsciously I was scared of becoming too close to our son out of fear of losing him in the early days. But at the time I felt like a monster. I felt like running away, pretending that none of this was happening , starting all over again…and this time I would do it right. I wanted to curl up in bed and shut out the world.

All I could do for our son was express breast milk for him, so I did this up to 10 times a day. It was the only thing that I could do that made me feel like a Mummy. Seeing doctors and nurses changing him, feeding him, looking after him, knocked my confidence as a mother. How was I supposed to be good enough to do all of these things? I had to ask permission to hold my own son.

It quickly became clear that I wasn’t coping at all. I was sad, I was angry, I was in denial…All in the same day most of the time. I looked at other families in envy of what they had. Walking out of the hospital doors with their babies, whilst we were camped out next to his incubator day after day. I dreaded going into that unit, it made me sick to my stomach just being there. I avoided holding my son, doing his cares and spent most of my time crying in the toilets.

Leaving our son every single night in that hospital full of strangers, has broken a piece of my heart to the point where it will never be the same again. Every night without fail I would hysterically break down in the car park, and felt physically ill thinking about him being all alone in pain wanting his Mummy and Daddy.

At home I would hear the sound of the monitors beeping and buzzing, I felt constantly on edge and unable to relax at all. I would lie in bed clutching my phone, petrified whenever the phone rang in case it was bad news.

My emotional heartbreak was also masking some serious physical problems I was experiencing post birth. With a dangerously high temperature and pulse I was rushed back into hospital, where I was diagnosed with a septic womb infection. If it had gone untreated for much longer I was told I would have experienced multiple organ failure. Another kick in the teeth for our family.

I had always suffered with low confidence for all of my life, but having an extremely premature baby rocked me to the core. After 7 long weeks our son was finally able to come home with us, and I thought that things would finally begin to get back to normal. With all of the free time now on my hands as a full time Mum, I began to process the enormity of what we had all been through as a family. How close we had come to losing him.

I knew almost straight away that things weren’t going to be as easy as I had hoped. I was constantly feeling sick with anxiety, having severe headaches, heart palpitations and was constantly sick with worry that our son was ill and that we could still lose him.

I was having horrible flashbacks and nightmares, and was constantly consumed and tortured by all of the what ifs? What if we hadn’t gone into hospital that night? Motherhood wasn’t all sunshine and rainbows, all smiles and giggles like I thought it would be. I was hurting.

With the support of my partner, I sought help from my health visitor and GP. It was a massive step. As a new mother, like most, I had the pre conception that asking for help and admitting your struggling was a sign of weakness. That it made me a bad Mum. But now I know that it made me the best Mum I could be. My son, and my partner, deserved the best Mum and Fiancee possible, and at the time that was far from who I was.

I was referred for cognitive behavioural therapy, where I could talk through my thoughts and concerns with someone who wouldn’t judge me, and someone who would sympathise and understand. I kept a thought diary, a no holds barred account of my everyday life. I was diagnosed with post natal anxiety, low confidence and post traumatic stress disorder. It was by no means a quick fix, but was a massive step in the right direction.

Almost 10 months on from the birth of our son, I feel like pieces of the old me are coming back. I am by no means back to the old me, but I am slowly and surely accepting what happened to us all. I am now at peace with the premature arrival of our son, and accept that it was not as a result of a fault on my part. But, a piece of my heart will be broken forever at what we had to witness our son going through.

Worries about our Mother-Son have totally vanished. Our son is my little shadow, and he lights up my life every single day. I am so lucky that I had the inner strength and courage, and the support of my partner to seek help to ensure that I was the Mum that he deserved.

Motherhood is definitely not what I expected it to be. It is a massive rollercoaster, that I don’t think will ever end. If you are struggling, please speak out and seek help. No one will judge or think badly of you. Take time to heal, and regardless of what I once thought, super Mum just doesn’t exist and that’s ok. It is ok not to be ok.