Pregnancy Complications

My HELLP Syndrome Experience (Part 1)

31 May 2015 by Leigh Kendall / Birth Trauma, Environment and Facilities, Informed Choice, Language, Pregnancy Complications / Comments Off

One night when I was 23 weeks’ pregnant, I woke up with a pain in my chest.

“Heartburn,” I thought.

It was uncomfortable, I felt constantly full. Normal heartburn medicine did nothing.

I was putting on a lot of weight. Normal for pregnancy, I thought.

I was becoming breathless. Related to the weight gain, I thought.

I was very emotional. Normal pregnancy hormones.

I Googled my symptoms. Preeclampsia was a possibility. “Don’t be ridiculous,” I thought, “I am only 23 weeks’ pregnant.”

This went on for six days. Getting progressively worse.

The heartburn became painful. I was unable to sleep. I got up in the night to drink milk. I don’t like drinking milk. I even resorted to taking paracetamol, having resisted any drugs in my pregnancy until then.

Day seven brought a routine midwife appointment. High blood pressure. Ridiculously high. Surely the machine must be broken, I have low blood pressure. Three pluses of protein in my urine. I had to go straight to hospital for further checks.

I knew the protein was a symptom of preeclampsia, but I was not worried because I was only 24 weeks pregnant. I thought it was a problem only in later pregnancy. I thought I would be bored in hospital. Lots of waiting around. I had forgotten my Kindle.

How wrong I was.

Arriving at Bedford Hospital, more urine given, blood taken.

A consultant comes to see me. I have preeclampsia and something called HELLP syndrome. Everything else is irrelevant because they say I will have to deliver my baby that night. I am seriously ill, and the only cure is to deliver the baby.

It is early, far too early.

I am distraught. So is Martin. We cannot believe it.

An injection is put in to my thigh. It hurts. But it is a steroid, to help my baby’s lungs develop. It is the first of two such injections.

I am taken to a room that doubles as an operating theatre. I have to remove all my clothes and put on a gown. I am advised to remove my rings, because sooner or later my whole body will swell and they would have to be cut off.

A catheter is inserted. I do not understand at that time the concern for my kidneys. I am sure someone must have told me, but I do not remember. It takes me several weeks to figure out the connection.

I must have a cannula so they can give me magnesium sulphate to protect my and my unborn baby’s brain from potential seizures. A doctor tries, then the consultant. Anaesthetists are called. They try, one arm each. So many attempts, but the cannulas do not flush through. I am able to count 20 puncture marks when the bruises appear later that week. Martin leaves the room because he cannot bear to see me in such pain.

Mercifully, they give up and insert a central line. I lie perfectly still, a plastic sheet over my head as they insert a line into my jugular. It is stitched into place. It is difficult to move my head.

They start the magnesium sulphate through the line in my neck. All of a sudden I am on fire. My skin is burning. I throw up.

A radiographer comes to take an x-ray of my chest, to make sure the central line is in the right place, not poking into a lung. A lead apron is placed over my belly to protect the baby. I am asked if I am happy having an x-ray because I am pregnant. “Of course I am not bloody happy about it,” I reply. But what choice do I have? A punctured lung not do me or my baby any good.

I am told I my baby will have to be born that night. There will be no time to induce me, so a Caesarean section it is. An epidural is out of the question because my platelet levels are too low. A general anaesthetic it will have to be. My baby is too small to be cared for in that hospital so will be immediately transferred elsewhere, with me following when stable enough.

Platelets are what enable the blood to clot. An epidural could cause bleeding in my spine and leave me paralysed. I do not want to be paralysed, but nor do I want my baby to be sent away from me, with the chance that I will never meet him.

Two neonatologists come to see me. This hospital is equipped to care for babies from 34 weeks. My baby is far too early. I can see the fear and uncertainty in their eyes. They say there is a 50/50 chance whether our baby will be born alive. If alive, he is likely to suffer a short, painful life because of brain bleeds and bowel problems. They ask us if we would want them to attempt resuscitation. We do not hesitate to say we want our much-wanted baby to be given every chance. We are terrified.

This is Monday night. Martin sleeps on a reclining chair next to me. Except neither of us sleep. We both sob, mourning the baby we have not yet met.

I am given hourly checks on my reflexes. I am not allowed to eat, with the possibility of a general anaesthetic soon. I am allowed only enough water to swallow more medication. I am attached to a blood pressure machine and a sensor on my finger to monitor my heart rate.

Morning arrives. My baby is still in my belly. Relief! I am feeling much better. I am allowed to eat, but my fluid intake is still strictly monitored. My mum arrives, having set off early that morning and driven all the way from Devon.

The doctors are puzzled. My condition has stabilised, and some things have even improved. I am special. The kind of special that no one wants to be. I am still not going anywhere though. I am forbidden from getting out of bed. They are waiting for me to be stable enough to be transported to a bigger, specialist hospital. Wherever has a spare bed.

A student midwife is posted next to my bed all day. I am glad, I have someone to chat to. I do not realise at that time that she is there not for my entertainment, but in case I suddenly have a seizure, or otherwise suddenly deteriorate.

The midwives consult the procedure for the care of women with preeclampsia, it is something they see so rarely. They are kind and different ones pop in to see me to see how I am getting on.

A friend visits. While she was there, she tells me months later, the consultant arrives. He tells me I am seriously ill and that they are very worried about me. “Oh ok!” I apparently cheerfully reply. My friend is terrified. I remember her visiting, but I do not remember this conversation.

I am completely, blissfully, away with the fairies.

That night Martin returns home to sleep. There are more hourly checks. Some people turn on the wrong light switch, turning on the dazzling theatre lights. The infusion machine seems to be programmed to occlude and alarm every time I drop off to sleep. I am exhausted.

Wednesday morning arrives. I am allowed to get out of bed for the first time since Monday evening. I waddle to the shower to sort of get clean – I am told to try to not get my central line wet.

A bed has been found for me at St George’s Hospital, in south London. Liverpool was next on the list. I am happy with south London. In fact, I don’t really care. An ambulance has been called to take me there. Two midwives will accompany me. What an overreaction, I think, I feel much better than I did on Monday. Martin is unable to come in the ambulance, not enough room, so he follows by train.

We speed down the M1, blue lights and sirens blaring. Zoom through central London. The ambulance is uncomfortable, lying on a stretcher.

I arrive at St George’s. Taken to another private room. The midwives and paramedics wish me well and depart. My history is taken by more doctors. They say I will be moving to another room, one with more monitoring capacity, but first they need to move the woman currently in there out: I need it more. The severity of my illness still doesn’t dawn on me.

I am taken in a wheelchair for Doppler scan. It is a busy waiting room. People stare at me in my bottom-baring gown, central line, catheter, and generally looking a mess.

Martin and I are excited at seeing our baby on the screen. We are told our baby is growth-restricted, but I am mesmerised. The sonographer apologises, she would like to explain more but it is a rush, it is the end of the day, and she needs to get the results to the consultants. We are given an appointment for another scan in a week’s time. Hope.

I wait in the corridor for a porter to take me back to the ward. My heartburn is getting worse. I feel so sick. The pain is awful. I just want someone to take the pain away. Back on the ward, I do not know what to do myself. The pain! I stand by the bed. I start to shake uncontrollably. I am given medication, the pain goes away. I feel so much better.

That night I sleep so well. Martin is on a mattress on the floor next to me. I have my hourly checks. The baby’s heartbeat is strong. Everything feels ok. I will wait in this bed for a few weeks, let my baby get bigger and stronger before he has to be born. I will be bored out of my mind, but that will be ok.

I do not have time to be bored.

Thursday morning, a contingent of consultants arrive. They ask me how I feel. I say I feel really good: I have finally had some decent sleep, and the pain has gone. They say I am not ok – my baby will have to be born that morning. For real, this time.

I sob and sob. It is too early, far too early. We were going to have more time. I am given an examination to see if I can deliver naturally, but my cervix is locked shut. A Caesarean it is. Martin holds one hand, a kind doctor another. Both try to reassure me. I ask whether my baby will be born alive. They cannot say. They tell me how ill I am, apparently. I do not remember.

Anaesthetists arrive to explain what will happen. I listen but I do not hear, I am too distressed, and anyway I do not care. A consultant explains the risks of the section: bowel and bladder rupture, the chance of no more babies. I do not care, do whatever you like to me, make sure my baby is ok.

I am wheeled down to theatre. I feel like the worst mother ever: knowing my baby is likely to die so my life can be saved. A strange calm comes over me. I accept that I am unlikely to meet my baby. We will get a dog, and go on a holiday when I am better. Martin and I kiss and cuddle. He is not allowed in theatre with me. I tell him our baby is going to be called Hugo. I liked that name, but we had not been able to agree on a name for our unborn son.

One anaesthetist gives me a fluid to drink to stop my stomach acid rising. I am told to down it in one, like a shot. They are both so kind. But this isn’t going to be a good time. They need to put more needles and lines in me. I am given a sedative so they can do that. That is the last thing I remember.

Hugo is born at 11.20am, weighing just 420 grams. He is ventilated and whisked off to the neonatal unit. Martin is there when I wake up. He tells me Hugo is alive. I give the biggest smile. I do not remember this conversation, nor do I remember him holding my hand while I am wheeled all the way to intensive care, the other end of the hospital.

I remember the nurse saying my name, trying to get me to wake up. I have more wires. One in my wrist marked ‘arterial’ to measure my blood pressure. A drain coming out of my tummy. Oxygen prongs up my nose. More magnesium sulphate being pumped in to me.

I just want to know about my baby. I want to see him, to be with him. I am told that day is impossible. I need to rest. There is still danger even after the baby is born. I lost two pints of blood during the section. I am swollen everywhere. I cannot grip anything with my hands. My mum feeds me fruit yogurt, I cannot use a spoon.

A consultant visits to see how I am getting on. Tells me “Sorry we had to do that to you, your organs were about to fail.” “Oh, that’s ok!” I brightly reply. Oh, blissful morphine had taken me even further away with the fairies .

A midwife arrives to express some of my colostrum for Hugo. Precious protection for my little boy. One thing I can do for him.

I feel totally helpless. There are so many beeps and alarms on this ward. I cannot move.

Martin says how amazing Hugo is, a beaming smile. I have photos of him. Precious photos. I want to see him myself. I cannot wait to be with my baby.

Friday morning arrives. I am told I can leave intensive care, and return to maternity high dependency. I will be taken to see Hugo on the way. I cannot wait.

Time ticks away on that Friday. For the previous day and night I had my own dedicated nurse, and now I share her with another patient. They take up most of her time.

I feel alone, helpless, and want to see my baby more than anything else in this world. Why do they not understand?

I ask, so many times. Nurses make calls. A problem with the bed I need. I do not care, I want to see my baby. My baby needs his mummy, I need my baby. No one takes me. No one does anything about it.

By the end of the afternoon I ask the nurse caring for the patient next to me (bizarrely, my nurse’s other patient is at the other end of the ward) if she knows when I will be taken to meet Hugo. I do not remember her exact words, but they were to the effect of “Pipe down, there are other patients much sicker than you on this ward.”

I am so upset. I am in a hospital a long way from home. I do not even know what this hospital looks like. My body has not been my own this week. I need care, compassion, understanding.

Eventually, at around 8.30pm they decide they will take me in a wheelchair to meet Hugo. At last! It is a delicate operation, I am swollen like a Michelin man, I have wires going into me and going out of me. I am not able to move alone, and have not mobilised since the C section. The curtains around my bed are drawn to preserve my modesty.

Suddenly Martin’s head appears in a gap between the curtains. I am not to worry, he says, but I need to come quickly. I can read the look on his face: there is much to worry about. I make him tell me: Hugo’s blood pressure is declining, and nothing they are doing is working. They are worried they are losing him.

I shriek. Shout at the nurses with their faffing. They are trying to be gentle with me, I know, but I am unspeakably furious at them for the time they have taken to take me to see Hugo. I am terrified he will die before I get there.

The nurse wheels me along the corridor. People get out of the effing way! Don’t they know my baby is dying? The wheelchairs are as bad as supermarket trolleys, she wheels me into obstacles. The pain shoots up in to my stomach wound. Martin takes over.

We get to the neonatal unit. Hugo’s nurse and consultant introduce themselves. They had been frantic, but the little monster’s blood pressure corrected itself the moment I arrived.

Little Hugo Boss knew exactly how to get what he wanted. His mummy.

I shrieked again when I saw him. So small, so red.

The consultant told me to open the porthole, touch him, get my mummy germs on him. I didn’t want to, I thought I would break him, but I did, I reached in with my hand and my son gripped my finger. It was the most amazing moment ever.

So began the most beautiful and the most terrible 33 and a bit days of my life. Hugo lived for 35 days, but I missed a day and a half of it.

That was Friday February 21 2014. Ten months ago to the day. There are many parts of the story I do not remember, but the terror of that wheelchair journey and the ecstasy of finally meeting my son are two moments that are etched in my memory forever.

I made a formal complaint: the written reply felt flippant to me, that they did not fully understand the gravity of the situation, the potential implication of their inaction. I met with representatives of the ward a couple of months later and read them the riot act. They will never forget me, nor Hugo. No other mother should experience that. Having HELLP syndrome and everything else that went with it was bad enough. That was unavoidable. My life was saved, Hugo given the best chance. I am grateful for every moment I had with Hugo.

But what happened on that ward that day was entirely avoidable.

I have felt a compulsion to write this today. I don’t know why: perhaps I just need to get it out of my head, in a raw, visceral way.

I know I am lucky to be here. The ‘heartburn’ and pain under my ribs was my liver in serious trouble. My kidneys weren’t doing well either. My blood pressure was far too high and my platelet level far too low.

Here I sit, 10 months later. Physically sound, thanks to the actions of the wonderful maternity, obstetric, anaesthetic and pathology teams of two hospitals.

Emotionally, I am still trying to process it. Pregnancy is supposed to be a natural event. I know bad things can happen during pregnancy: babies lost, babies tragically born sleeping. But the placenta turning your body against you? The placenta sending toxins around your body, shutting down your organs. I know now it is not my fault, but it does not prevent me feeling guilty.

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

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Don’t call me high risk! #MyPositivePregnancy

31 May 2015 by Susanne Remic / Birth Trauma, Informed Choice, Pregnancy Complications / Comments Off

This post was written during my 4th pregnancy, my journey towards a VBA3C. Throughout this pregnancy I was fit and healthy yet classed as high risk due to having had three previous c-sections.

Don’t call me high risk.

Don’t take heed of the warnings that spew out into the papers at an alarming rate. A VBAC is not a disease, or a dirty word. A woman who has had a c section is not ‘risky business’. I am a woman who wants to give birth to her baby. To feel her baby. To be awake to see her baby take the first breath, open their eyes onto this world and feel their skin against mine. I am a woman who wants to be one of the first people to hold her baby. I am a woman who wants to sit up and hold her baby. To feed her baby with arms that feel the life within. I am a woman who wants to tell the world her baby’s name; not discover it for herself when she wakes.

Don’t call me high risk. Don’t greet my intentions with raised eyebrows and furrowed smiles. Don’t assume that my intentions will not be ‘allowed’. Don’t deny me the chance to be normal for once.

This weekend I came across this article by Milli Hill (@millihill) and I found myself nodding along to almost every word.

When my body screamed out to me that my son was on his way, the ‘High Risk’ label echoed the cry and we called the hospital straight away, as we’d been told. We went straight in, as we were told. We never questioned a thing and we never assumed that we were anything but high risk. The fact that I was labelled as High Risk left me in no doubt- what I was doing was scary. I wanted no part of it. But in actual fact, lots of women have a VBAC, and the fact that we didn’t should not be held against me.

This time, I am a woman striving for a VBA3C. And supposedly higher risk than ever before. And yet I feel more positive this time than I ever have. Whether it is age, experience, or having come to a point of peace with what has gone before, I do not know. But I do not feel scared. I do not feel High Risk. I feel like a woman who passes a mirror and catches sight of her swollen body and smiles, stops to capture the moment; when once I would have collapsed inside.

I feel like a woman with a life growing inside. I feel special. I feel on the edge of something wonderful. I feel strong. Strong enough to question decisions that are made for me. Strong enough to face the fear that I know will come as the weeks pass by. Strong enough to cast aside my label and just be a woman giving birth. For once.

That is my positive pregnancy. It’s taken four attempts to get here and I’m going to hold on to it.

To find out more about #MyPositivePregnancy, #TeamMama and Mama Academy,please click here. You can also read about the Made to Measure campaign here and if you have a moment, please sign the petition urging all UK trusts to help save 1000 babies by adopting The Perinatal Institute’s GAP programme.

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IUGR: our journey so far

31 May 2015 by Susanne Remic / Pregnancy Complications / Comments Off

The following post was written on Ghostwritermummy when I was 32 weeks pregnant. Elsie was born at 37 weeks and you can read about her birth, and more about our IUGR journey here.

IUGR

IntraUtarine Growth Restriction.

A baby that is not growing as it should be.

Not just small.

Not just on the last percentile.

Not just the bottom of the average, as some babies must be.

A baby that is not thriving where it should be.

A baby that is deemed to be better out than in.

A baby at risk.

A high risk pregnancy.

When I was born, I was SGA. Small for Gestational Age. The doctors sent my mum for an x-ray as they were convinced she had her dates all wrong. I was born one week later, smaller than I should have been. My eldest was SGA. My third baby was SGA. These facts put me at risk for another SGA baby, or for an IUGR baby. For the record, SGA does not mean IUGR, but IUGR babies are all SGA. Still with me?

At my booking in scan, my consultant booked three growth scans for us and gave us a personalised growth chart. No more plotting my baby on the national average. This baby was to be measured according to what is normal for me. This was reassuring, but we were convinced that the growth scans were unnecessary. We’d had them with all three previously, one for each, and were told each time that baby was well. On the smaller side, but healthy and thriving and gaining weight well. We decided that we’d attend the first growth scan, but we’d probably request for the others to be cancelled. The biggest thing was that we wanted a VBAC. So we wanted to do what the doctors seemed to think was important. But if, as we were sure would happen, the doctors agreed that baby was growing well, we felt subsequent growth scans were pretty pointless.

So the first growth scan arrived at just over 29 weeks and from that point onwards everything changed.

IUGR had been mentioned in previous pregnancies, but always dismissed. This time though, we were told that baby might not be ok after all. There was no question that follow up scans would be necessary. Four weekly appointments were changed to two weekly, with a view to reaching 34 weeks gestation. Considering our first two were both born post 40 weeks, the idea of an early baby was a huge shock to us. We’d honestly assumed we’d be told all was ok, that baby was small but perfectly fine. Not so.

The second growth scan was devastating in many ways. It was found that baby was still small, and that blood flow from the cord was reduced. Baby was not receiving enough oxygen. Baby was starving inside of me. Not thriving. Not just small. Not just at the bottom of the percentiles. Not just SGA.

Appointments were amended again, this time to weekly and we were sent home with even more questions than before. We’re still unsure what it all means, and the only thing that is super clear now is that there will be no VBAC. There may be an early baby. There may be special care. There may be health issues later in life. There are so many may bes. There are no certainties.

During all of this, the one thing that has been drilled into me is to monitor baby’s movements closely.

I have never ever felt concern over this before. Three previous pregnancies and I had always felt confident that baby was well and kicking as it should be. This pregnancy has always been different though, even before we knew anything was wrong. Movements were late; later than previous pregnancies. Movements were scarce for a long time. We put this down to the position of the placenta, and we’re still told that the fact that it’s anterior could be the reason why movements are still not as noticeable as they are supposed to be. Following the second growth scan, I was put onto the monitor and everything seemed fine.

The next scan did not measure growth. Instead the fluid around baby and the flow from the cord was scrutinised, and all found to be within normal parameters. Hooray! Good news, at last. Although the doctors were careful to advise me that weekly scans were still necessary, and that baby was still small. It was also made clear that the results from the scan were normal today and may not be the same next time. Again, I was put on to the monitor to check baby’s movements and although they were definitely reduced from the last time, they were still sufficient enough for me to be allowed home. No decelerations and totally normal readings all round.

And so here we are. Days away from another scan, where I will be 33 weeks and 5 days pregnant. Potentially days away from delivery. The magical 34 week mark. And so many questions.

Is baby really IUGR? Or just SGA? Is 34 weeks really a suitable gestation for delivery? With each week that passes now, the risk of stillbirth increases, and yet there are risks associated with premature birth if they take baby too early. It is still hard for doctors to accurately diagnose and in many cases this can only be done once baby is here. If the birth day is at 34 weeks and baby is not IUGR, the chances of a fast recovery and minimal issues are great. If baby is IUGR, more help will be necessary. So many ifs!

We wait, and yet the waiting is excruciating. People keep saying that the longer they leave it, the more weeks that baby stays in, is better. But there will come a point where that is no longer true. There will come a point where baby is not moving as it should and they will decide to deliver. And I am so scared that they won’t make that decision at the right time.

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Birth trauma and PTSD – Raising awareness

30 May 2015 by Emma Sasaru / Birth Trauma, Continuity of Care, Environment and Facilities, Language, Postnatal Care, Pregnancy Complications / Comments Off

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When people think about post traumatic stress they often think of a soldier, returning from battle traumatised and battered by the ravages of war and the terrible things seen and experienced.

However PTSD doesn’t only affect those affected in the aftermath of war or a terrible natural disaster or violent act. PTSD can also affect someone in circumstances that should be safe, that should be happy, that should be the start of an amazing journey. For some women the birth of their baby can be traumatic and can be a trigger for PTSD that can severely affect their life. It can affect bonding with their baby, relationships with family and friends, doing everyday activities and physical health. So what is birth trauma and PTSD and how can we help and support women that are suffering?

Firstly what is birth trauma?

‘Birth trauma is in the eye of the beholder’ (Cheryl Beck) and this is true. What is traumatic to one woman may not be traumatic to another woman. Each woman’s experience of birth is unique to her and many things can add to a woman feeling her birth was traumatic. For some it maybe that her birth was a truly scary event, she may had been in an emergency situation where her life and that of her baby was at risk. Maybe her labour was very lengthy and very painful. It may be that a woman’s birth had high levels of medical intervention, such as induction, caesarean section, episiotomy, or other medical issues. It may be that a woman gives birth early and her pre-term baby requires care in NICU. Sadly some women have a birth that results in damage or injury to her baby and some lose their babies at birth.

For other women trauma can result from the way she is looked after by the staff responsible for her care both during the birth of her baby but also postnatally. She may feel a loss of control, dignity and privacy. There may have been a lack of information or a woman may feel she wasn’t listened to and her choices not respected or overlooked. She may feel she had medical procedures done without her consent or without proper explanation or that she was left with no choice. Or maybe unkind, cruel words and actions made her feel vulnerable and exposed.

Some women find birth triggers or adds to previous trauma such as rape or domestic abuse.

Often women who feel traumatised from their birth will feel isolated, other women may not understand why she feels traumatised, after all isn’t childbirth a ‘natural thing’? So a woman can feel guilty and somehow ‘weaker’ than other women for being unable to ‘cope’ with birth . She may feel she should be over the ‘birth’ and often well meaning friends and family will say things such as “at least you are ok and you have a healthy baby”. This only confounds the woman’s feelings and makes her feel more isolated and can damage relationships with partners, family members and friends as a woman feels no one understands and so she withdraws deeper into the trauma. Depending on the nature of the trauma a woman may feel unable to have further medical tests such as smear tests. Sex may also be affected as a woman may fear further pregnancies, or even just the act of physical intimacy itself. Many women who suffer birth trauma may struggle to bond with their baby, others become overly anxious of their babies health and wellbeing and constantly worry about every aspect of caring for their newborn.

For a woman that has lost a baby during birth or whose baby has been injured during birth she may experience overwhelming guilt, she may feel like it is her fault that she somehow failed her baby or that she should somehow have prevented it. She may play over and over again the birth in her head seeking answers or ways she could have changed the outcome.

Feeling like they have no voice, are misunderstood and weak many women will seek to hide their true suffering and ‘carry on’, the weight of trauma bearing down on them crushing hope, light and happiness as they try desperately to cling to normality. Everyday tasks become hard and just coping day to day can feel overwhelming. Their physical health too may suffer, as the effects of trauma ravage them mentally. Lack of sleep, trouble eating and the constant struggle all takes its toll. Flashbacks may take them back to the event reliving moments, even smells and conversations causing great distress and anxiety.

So what is PTSD and how does it differ from postnatal depression?

Often women can be wrongly diagnosed with PND when in reality they have PTSD. While PTSD and PND can overlap as they do have some similar symptoms, they are very different. Its important that a woman receives a correct diagnose so she can have the support, help and therapies she needs. PTSD is the clinical term for a set of normal reactions to a traumatic, scary or bad experience or event. It can occur after a person experiences or witnesses something that was or they perceive to have been life-threatening.

Signs of PTSD include:

Feelings of intense fear, helplessness and/or terror.
The re-experiencing of the event by recurrent intrusive memories, flashbacks and/or nightmares. The individual will usually feel distressed, anxious or panicky when exposed to anything which remind them of the event.
Avoidance of anything that reminds them of the trauma. This can include talking about it, the place where the trauma happened or people that may have been involved in the trauma. (such as hospitals, doctors, healthcare professionals) Even T.V programs or books maybe avoided.
Bad memories and flash backs often result in difficulties with sleeping and concentrating, thus affecting daily activities. Sufferers may also feel angry, irritable and be hyper-vigilant or jumpy, easily startled.
Suffers may suffer panic attacks, depression and anxiety. They may feel detached, alone and have a sense of something bad may happen to them or their loved ones.

It is important to remember that PTSD is beyond the sufferer’s control. It is the mind’s way of trying to make sense of an extremely scary traumatic experience and are not a sign of an individuals ‘weakness’ or inability to cope. The person cannot just ‘get over it’ or ‘pull themselves together’ or ‘move on’. Rather they need help and support to process not only what has happened to them but also the feelings surrounding it.

So what can help a woman who has suffered birth trauma or PTSD?

For partners, family and friends its important to acknowledge what has happened to the women and her feelings surrounding it. Encourage her to talk about her feelings if she is able to. Help her to see you want to try to understand how she is feeling and that you recognise how traumatised she may feel. Reassure her that you are there for her and that you will help in anyway you can. You maybe the only person that she trusts. 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.

Encourage her to get help, whether it be her GP, health visitor, midwife or a charity such as the Birth Trauma association or Mind. This will not be easy as she may have a fear and distrust of telling anyone how she really feels especially a healthcare professional. Reassure her of your support, maybe offering to attend any appointments with her if she wishes. Asking for help will be hard, and so will the time undergoing any therapies being there for her providing emotional support is so important.

Also, helping with daily activities can mean so much, helping her get much needed rest offering to prepare a meal, or to do some shopping can also be invaluable.

Helping someone with PTSD can be difficult and frustrating.Partners and family can feel lost and confused too. Reading up on PTSD can help you understand it and how it can affect someone that is suffering.

Of course some partners too can feel traumatised and suffer from PTSD after seeing the birth of their baby. It is important they too seek help and support.

What about healthcare professionals?

Its important that any healthcare professional’s when supporting a woman after birth build a relationship built on trust. LISTEN, this is the single most important thing to a woman who is suffering. Listening enables you to truly know what she has been through, how she is feeling and whats important to her and her family. Listening will enable you to know if she is likely to be suffering PTSD or any other perinatal mental health disorder. Listen also to her partner and family, they know her best, if they feel something isn’t right or reach out for your support then be there. Ask for training in order to help you understand the different types of perinatal mental health issues and know the pathways and any local support available to signpost a women to. Be careful of language used and do not minimise her feelings or experience. If you know a woman has had a traumatic birth from postnatal notes etc, ASK, don’t ignore it.

What can a woman who has had birth trauma/PTSD do for herself?

Speak to someone, partner, family, friends, midwife, health visitor, GP. Don’t suffer in silence.
Remember you are not alone, there are others too that have been affected by birth trauma.
Remember you are not to blame.
Look after yourself, make sure you rest and eat a good balanced diet. Do things, activities that help you to relax.
Know your limitations and what you can do both physically and emotionally.
Speak to your hospital about your experience. Some women ask to see their medical notes and discuss exactly what happened to them and why.
Seek help and treatment. There are various treatments for PTSD such as counselling, Eye Movement Desensitization and Reprocessing (EMDR), cognitive behavioural therapy (CBT) and medication.
Find local support groups or support groups on social media (such as birth trauma facebook support page)

Birth trauma is real and so is PTSD, its important that women get the help and support they need to overcome it. The birth of her baby can affect a woman for the rest of her life, it may not be possible to completely prevent birth trauma but what we can do is support women when things do go wrong and make sure that we show them love, compassion, kindness and help even at the darkest times so they believe that it will be possible to bathe in light again. hafiz-quote1

my story of birth trauma

Emma Jane Sasaru

@ESasaruNHS

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#MatExp – Caught in the Middle

29 May 2015 by Helen Calvert / Continuity of Care, Environment and Facilities, Pregnancy Complications / Comments Off

I am very grateful to yet another member of my Facebook group for providing me with her maternity experience to share with you. In her own words…..

“My antenatal experiences with my NHS midwife and one consultant led to me transferring to the One-to-One Midwifery Service from about 30 weeks into my second pregnancy. The main issues I had with the NHS were:

The cold and distant manner of the midwife

The total lack of concern or questioning when I declined the breastfeeding DVD (as a natural term breastfeeder with my older son, with intention to tandem feed, I felt I didn’t need it – the midwife simply moved on to the next item and made no attempt to find out why I didn’t take the DVD. I found this shocking.)

At a consultant appointment the consultant informed me that she had booked me in for an induction on my due date, due to my maternal age. No discussion. told her that that would not be happening.

I had my heart set on a MLU, natural water birth, and I raised the issue of booking an induction without discussion or my consent issue with my MW. Her response was that I will do as the consultant decides. At this point I referred myself to One-to-One.

Final point – one slightly raised blood pressure reading triggered off me being designated a high risk pregnancy, so I would have found myself on the consultant led side of things to give birth. Another big driver to move service. My BP was fine throughout the remainder of my pregnancy (with the help of Labetelol).

The whole experience was very ‘tick boxey’, with little or no consideration of the overall picture i.e. my health and fitness, my wishes, previous birth etc. I was very disappointed by the apparent lack of breastfeeding promotion.

So I had my second baby by natural home water birth, with the support of One-to-One Midwives. I ended up in hospital for ten days postnatally with HELLP Syndrome. One issue arising there was the strained relationship, and lack of joined up care provision, between the NHS staff and One-to-One. Before transferring myself to One-to-One, I had heard from a fellow NCT Refresher class Mum, that she had had a bad experience in this regard also.

I was transferred via ambulance to Arrowe Park Hospital following the birth of my daughter in April 2014, with what turned out to be HELLP Syndrome. My daughter came with me. We were in for a total of ten nights.

Although I was a patient, my daughter was not. This became a problem when she needed to have her 72 hour check. In the initial stages, my partner was doing the communicating with my One-to-One midwife; and she told us that my baby would have to be taken to an alternative venue for the check by noon on the Saturday. I was in no fit state to add to the discussion, being quite poorly and ‘not with it’.

Ostensibly One-to-One staff were not allowed on the hospital premises to carry out the check; NHS staff could not do it as my daughter was not a patient. I did become involved in the discussions when Saturday morning arrived, my partner was trying to arrange child care for our older child (not easy as we have no family close by), and it dawned on me that my newborn baby was about to be taken away from me. Breastfeeding aside, that would be traumatic for all involved – baby, me and Dad!

Bearing in mind that the main issue for me was dangerously high blood pressure at that point, I was drawn into having direct telephone conversations with One-to-One, and quite heated talks with NHS staff – who made out that there was absolutely no way One-to-One could come into the hospital to do the checks – no insurance I think was the issue from memory? As my baby was not a patient then they definitely could not perform the check – to do so would generate a second NHS number for her, which I was told would have the potential to cause us problems when trying to register her birth. The systems would not be able to cope with it. We felt that systems were taking priority over the well-being of our newborn baby.

In the end a One-to-One midwife did come into the hospital to do the check. There was an uncomfortable atmosphere between the two sets of staff.

On a side note, my daughter was diagnosed with a mild tongue tie and a referral supposedly made. In fact no appointment ever came through. Fortunately the tongue tie was never an issue.

My One-to-One midwife came to see me in hospital on a number of occasions; each time I picked up on tension between the parties.

Apart from the stress around my daughter’s check, I have to say that the majority of the care I received on the labour ward was fantastic. Apart from one incident where I suffered a huge loss of dignity and lack of respect or concern for my personal space and being. In fact I felt totally humiliated. It happened on my final night at Arrowe Park (so day ten of my stay); I was rushed down from the maternity ward to the labour ward as my blood pressure was so high. I was given intravenous drugs to bring it down; it would have been a trip to the cardiac unit if this had not worked. I needed the toilet – and not just a wee. I was told I had to remain on the bed and my request to use a commode was refused. So I had to use a pot under the sheets. Except the sheet was inadequate and I knew that I wasn’t covered up. So I tried to throw my dressing gown over my knees. People were coming and going in and out of the room. I had a sudden moment of realisation of the total indignity of the situation – people could well have been able to see me trying to have a poo, knees up in the air, largely uncovered. I cried. I just wanted to go home, with my baby.”

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#MatExp – The Good, The Bad and The Unacceptable

29 May 2015 by Helen Calvert / Environment and Facilities, Language, Pregnancy Complications / Comments Off

When I first came across Florence and Gill and the MatExp Campaign, I knew my group would have a lot of maternity experiences to provide to them. We are always discussing and sharing birth stories, and when I asked them for their feedback it came in abundance. Their stories, from all round the UK, have been passed on to Florence and Gill, and also to Jeanne, midwifery lecturer at Salford University. I have permission to share an initial snapshot with you here, to give you a flavour of the ordinary maternity experiences that are happening around the country and which, for the most part, do not get formally discussed once they are over.

The Good

This was the hardest section to find quotes for. Not, thankfully, because I didn’t have any good birth experiences to work with, but because I was looking for quotations praising the midwives. But when you read a positive birth story the midwives are rarely mentioned. They are there, and their actions are noted, but they do not receive praise for their interventions, because a positive birth story is about the mother: her experience, her actions and her achievement. Rest assured there are plenty of positive stories being shared amongst us, but in terms of positive feedback there is only a little:

“Although I ended up with a c-section after induction, pre eclampsia and gestational diabetes plus a lengthy hospital stay, I only have good things to say about my experience. At all points I felt they were doing the best for me and my baby. I loved the fact that, during my stay in hospital, when midwives asked you how you were feeding they always responded ‘bottle feeding, brilliant’ or ‘breastfeeding, brilliant’ – there was no obvious preference amongst the staff but they were very supportive of either.”

“When I got the epidural I had a lovely midwife waiting with me for the drip to work. I really appreciated her calm, kind attitude – she was so so lovely and I think the fact that it was one to one care made it amazing. I felt so well cared for. When I started to push everyone was SO LOVELY and I felt very in control. It was when they said I needed forceps I started to lose it a bit but they were still lovely even though I was throwing the F-word around a bit by now. I was transferred to theatre and started to get a bit scared, but again my midwife was very reassuring. I had a spinal block which sadly went too high and I started to suffocate. I had to have a GA and I was very frightened but seriously, all praise to the staff, they were so calm and kind. The consultant offered me a debrief appointment and I went to it about twelve weeks later – it helped me process everything. Whilst it wasn’t a great experience I feel the hospital did everything they could to help me and safeguard my emotional health following a scary time.”

“I had excellent care in my second pregnancy with the same midwife all the way through; wonderful home water birth and excellent postnatal care, including breastfeeding support. A great example of how important it is having the same person looking after you and building a relationship.”

The Bad

“While being assessed I gave permission to be examined vaginally on arrival to assess my progress. On finishing the exam the midwife said ‘you’re a good 4-5cm dilated already so I gave you a good stretch whilst I was there to speed it up.’ I had not been asked if I would like a cervical stretch. I did not give my permission for a cervical stretch.”

“Both myself and a friend progressed very quickly once the induction took and struggled to cope with intense pains that came every minute or less. Both of us had dismissive midwives who offered no explanation as to why the pain was so intense and why we could have no painkillers other than paracetamol. We were both told to go to sleep (as if!) and told that if we couldn’t cope now how would we cope when labour was established – which was terrifying! Both of us coped just fine on gas and air.”

“Breastfeeding support was rubbish. My husband showed me how to manually express milk after reading the breastfeeding book. The support workers just shoved my boob in baby’s mouth but I didn’t understand how I was supposed to do it when they weren’t there.”

“…..another midwife was lovely and kind and murmured comforting words as she fixed the belts and monitoring equipment, then left me behind the screen. Bossy midwife then came along and yanked back the screen, announcing that she ‘liked to see her ladies when there are being monitored.’ So I was sat with my jeans so low that my pubic hair was showing, my whole bump exposed, while a couple of women I didn’t know and their partners tried to look anywhere but at me. I had very little shame by that point but this upset me. It felt like punishment.”

“With my 4th baby I was still keen to have a homebirth but requested a growth scan near my due date to monitor baby’s size and check it would be safe [due to previous shoulder dystocia]. This was refused. They ‘didn’t do growth scans’. I could have a homebirth but not a scan. I repeated the request to other midwives but nobody suggested referring me or even seemed to care. I eventually found a midwife who took me seriously and referred me to the consultant. When I eventually got my hospital appointment I saw a registrar who honestly didn’t seem to know what he was doing. He said I couldn’t have a growth scan but refused homebirth in case I had shoulder dystocia again. After another appointment I insisted I saw the actual consultant. The consultant said I couldn’t have a scan but agreed to do a sweep 1 week before my due date. In the end, I asked about a due date induction to reduce the risk of the baby getting too big as I was so frustrated at this point and nervous of baby getting stuck again. They seemed surprised but agreed, so that’s what we did.”

The Unacceptable

Despite the draw of a catchy title, I refused to refer to any of these experiences as “ugly”. A new life entering the world is never ugly. But I feel that “unacceptable” is appropriate for these two experiences, and I hope that you do too:

“My midwife asked, whilst examining me to see how far dilated I was, if I’d like a sweep. I was in agony so I said no. She did it anyway. I screamed and hubby said he had never seen me look so pained before or since. She only said ‘done now’.”

“All going smoothly until I haemorrhaged. I was rushed to delivery and the consultants managed to stem the bleeding, with a review scheduled to decide if theatre was necessary. There was a question mark over retained placenta/products. The placenta was torn and was not confirmed as complete. I had another procedure to stem another heavy bleed with the review still scheduled for later in the day. A junior consultant came and decided that they weren’t going to take me to theatre that day despite still having heavy bleeding. I had not been given any food or drink (other than water) since the previous evening. This was 2pm on Saturday.

After this, I didn’t see a midwife (nor anyone else) for hours. My room had blood covered surgical instruments left on the side plus the swabs etc from the procedures, my catheter came out and I was left in a soaked bed for what seemed like a long time plus the bleeding was still very bad. My buzzer was not answered for long periods of time. I was eventually transferred to a ward at around 8pm. Once on the ward, I continued to bleed and clot heavily. The midwife said this was normal. My obs were low but I didn’t want a blood transfusion unless absolutely necessary. There was no further mention of retained placenta/products and I was allowed home after 3 days.

This resulted in four and a half weeks later being rushed to surgery to have the retained products removed. This was after 3 separate haemorrhages which again the community midwives said just needed monitoring. I was lucky that I didn’t get an infection. The advice in A&E was that I should have called an ambulance.”

I have a lot more #MatExp feedback to share, too much for one blog post. I will put up more soon. For now I will leave you with this illustration of the discussions at a recent Families & Midwives Together Conference I attended at Salford University:

What could have been better about the care you received?

Helen Calvert. 2015

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