I think it is time I talked about the other significant emotional and physical event in my past, which was full of joy, shock and pain all at once. Ella’s birth. She was 19 two days ago and so it seems appropriate I reflect on it now. Her birth marked a dramatic change in the course of my life, not only personally but professionally. It caused an immediate physical trauma and for a period an emotional and psychological one (for Rupert also).
I was 24 when I found out I was pregnant with her. My older sister Clare had just given birth to her first child and I had been to London to visit my new niece. During this visit my sister said something like, ‘your turn next’. We had only recently returned from our honeymoon, we had also only recently met (given that I had been living in Boston for the previous year) and so children were something we were definitely intending to have, just not then. So I gave lots of reasons as to why we would be waiting a year or two at least. We talked about her pregnancy a bit and the birth and in the course of the conversation she dropped in that she had gone off coffee and alcohol during the pregnancy.
Later that day, at Victoria Station on my way home to Brighton, I had an irrational and sudden desire for some Burger King chips. As I sat on the train home stuffing these, animal like, into my mouth I paused for thought, recognising that my behaviour was not normal. I didn't particularly like Burger King chips, but these ones tasted like heaven. I had a nagging thought that would not go away. It related to Clare’s comment about going off coffee. I had recently not been enjoying my morning coffee and my taste for alcohol was not what it usually was.
I started doing my maths. My cycle was always quite long and could vary by a few days either way. It was perhaps on the longer side this month. Then there was the small belly I had noticed which had made doing up my trousers quite tricky. I had taken this to be post honeymoon weight gain and had begun morning sit ups to try and tame the new fat. Having been pregnant 4 times now, these signs are all so obvious, but I had honestly not spent a lot of time considering pregnancy and had therefore no clue whatsoever what was a pregnancy sign. But on that train that night, I started putting them all together and considering any other strange changes.
One stood out. My smell was heightened. I had recently become aware of smells I would not normally notice and one particular recent daily incident stood out as an example of this. At the time I was commuting to London, where I worked as a ‘Tutorial Fellow’ at the London School of Economics (basically a dogs body to the lecturers and researchers). I would catch the same commuter train every morning and sit in the same, Harry Potter like compartment (these still existed on the London to Brighton line then). I caught the train from Brighton Station, and at Preston Park, the first stop, the same man would get on in my compartment. This is what happens with commuter trains, people are creatures of habit and once they have found their favoured seat and carriage they covet it as if they owned the rights to that particular position. God forbid anyone else took your seat. The regular commuters unconsciously respected the natural order, but occasionally newbies would board the train and muck the whole system up. An occurrence which definitely signalled a bad start to the day. Nearly as bad as standing on a London underground platform, carefully positioned in a place you have carefully calculated will result in you being immediately in front of the doors when the train stops and the driver pulling the train up a little tighter forward or not quite as far up as usual leaving you facing a sheet of metal and window with the doors a foot or so to your right or left and you guaranteed a journey standing in close encounter with the armpits of fellow commuters.
Anyway. On my normal commuter train I had begun to notice that this particular man smelt incredibly strongly of alcohol. I could almost see alcohol vapour as he exhaled. I have a face which I apparently don when I disapprove of something or see something that I don’t like. Rupert calls it my ‘camel pee under the nose’ face. I somehow scrunch my nose up in a sign of disgust or disapproval. Well, as this man sat himself down next to me there he would have whispered in my ear ‘there seems to be quite a bit of camel pee around’ had he been with me. So after a few days of this I had moved to the adjacent carriage.
As I considered these recent subtle changes it crossed my mind, with some horror I might add, that there could be a chance that I was maybe pregnant. I passed a late night pharmacy on the way home from the station and bought a pregnancy test. Rupert had also been out that night but at the pub with friends. I waited until he arrived home to do the test. We had not even mentioned the word pregnancy for a long time, if ever, and then suddenly he was confronted by me holding a pregnancy test. He had only been in the flat for a few minutes before I disappeared into the toilet. The blue line appeared almost immediately. I still remember the shock. It was just so out of the blue, not part of our medium term considerations at all. Funny the detail you remember about certain key moments in your life. I went and lay on our sofa in foetal position, honestly speechless, and started watching Cracker with Robbie Coltrane. Every tummy gurgle became laden with meaning. I had something inside me! I have to admit I was horrified at the thought. The next day I went to a book shop and flicked through some pregnancy books, still very numb. There was a very graphic, week by week book which I eventually bought and had by my bed to study as the weeks passed, but that day I was only up to flicking through books. I got to the section on week 40 and the birth and tears began to roll down my cheeks. Not sadness just shock and realisation. That would happen to me.
In the end my pregnancy with Ella could not have happened at a better time. I was young and fit. We may otherwise have hung around for the perfect time, which so often never comes. This had forced our hand and we began our family then so I have always been a relatively young mother. Thank goodness because, rather than being a 44 year old with advanced cancer, and very young children, I am a 44 year old with advanced cancer and children who can dress and feed themselves, sleep through the night, almost get their school bags ready unaided and even help around the house and my oldest has almost reversed the roles and is now mothering me.
The pregnancy was pretty straight forward, I grew enormous. Rupert did all the cooking, shopping and general housework as I spent long periods eating magnum ice creams on the sofa and being generally spoilt (oh how this changes once you have your second plus pregnancy). The complications began only at the very end. Ella simply did not want to budge. We did not know if she was a girl or a boy (and never did for any of our children - nothing matches the magic of that moment when you find out). She was due on June 20th and I had become fixated by this date. After 10 days overdue I was under some pressure to be induced. I resisted as much as I could (I knew little about childbirth at the time and imagined that you just turned up at hospital and the midwives or doctors would deliver the baby - not recognising that it was in fact me who would deliver the baby and me who should be in control).
On 2nd July I was booked for an induction. A few days before we had tried hot curries, lots of walking up hills and castor oil, to no effect. Then I had acupuncture. I was sad that I would not spontaneously go into labour, it felt so sterile to simply turn up at an appointed time. That last night, July 1st 1996, Rupert and I played jenga. It was a funny old evening knowing we would never be alone as a couple again, this was the end of what had been a very short era and life was to change. We had the bag packed. We went to bed quite late and only a couple of hours later my waters broke. I simply bounded out of bed. It was too exciting for words, I had gone into labour and would not need inducing. An older more knowledgable me would have simply hunkered down and stayed at home as long as possible, even considered a home delivery as I had with William, our third. But at that time I wanted to get to the hospital as soon as possible (influenced by too many mad dashes to the hospital in films and TV programmes). I was the first of my friends to have a baby and so had really no frame of reference, I had no experiences to learn from and I really had read very little.
At the hospital I dilated very slowly. July 2nd 1996 was a hot day. I was in a room high up in the Tower at the Royal Sussex, where so many Brighton babies are born. How many albums are there of those moments in labour and the view across Brighton from the labour room? After 11 hours and almost no progression, I felt in great pain and was quite distressed. Ella was posterior, which made things particularly uncomfortable. I had no really good tactics to manage this and was simply unprepared. The midwives were lovely, but during the course of the labour I went through 3 working shifts (the end of one and start of another with a full shift in the middle). I agreed to an epidural.
The epidural was not well sited. I was put on syntocinon to help progress the labour. The epidural was effective for periods but would then the effects seemed to fade and the anaesthetist was called frequently to keep topping it up. In the internal inquiry almost 2 years later, the review of my notes showed that I would have to have weighed something like 12 stone given the number of top ups I had over the period for the level to be safe, but I had not been recently weighed and it is unlikely I weighed anywhere near this. After another few hours it was decided that I was not progressing, I was stuck at 4 cms, and that a c-section would be the next step. By this time it was very very early on the morning of 3rd. The anaesthetist came to top me up again and decided to stick with the same epidural for the operation. Rupert asked if this would be OK given it had not been very effective over the previous day, but she was adamant that the dose would be significant and it was OK.
I was wheeled into theatre, with Rupert accompanying. My blood pressure dropped (which can happen after so long with an epidural) and my teeth began to chatter. They removed the pillow from my head and my neck ached as I had been in one position for such a long time. The team in theatre (it is now around 1 or 2 in the morning) were pretty silent. No one really talked to us. The anaesthetist tested my stomach with ice (and she said later performed a pinch test - i.e. pinch the skin to see if I could feel anything) to check that the extra dose through the epidural was working. I could feel the ice first time she asked (indicating the epidural was not effective yet), and remember her looking slightly impatient. She claimed later to have done the pinch test and that indicated all was OK. But the moment the surgeon started cutting through the layers of my stomach it was clear that the epidural was not effective. I could feel it. The surgeon later claimed that he had cut through the outer layers and it was not until he had got through these that I could feel it.
The ensuing scene was one you could imagine seeing in a dramatic episode of Casualty or Holby City or possibly a scene of battlefield surgery. From the moment I felt the knife I started shouting ‘I can feel the knife, I can feel the knife’. Lots of things happened at once. The surgeon (who later said he had lost confidence in the anaesthetist), then ordered that Rupert leave the theatre as they would have to do a general anaesthetic. In the meantime I am also shouting that my legs are falling off the table. I remember repeating it, and no one seemed to be talking to me. Again later, the midwife who was in theatre, and at the leg end of my body, described that my legs were moving and that she was having to hold them in place. I have often imagined what was actually going on and think it was related to the anaesthetic which worked in some patches and not others which meant that I did not have total control of my legs. The pain in my stomach was causing an involuntary movement in my legs. I think I must have been trying to do what you would do if you were punched in the stomach - and draw my legs to my stomach. But being not in full control of them it felt, from where I was, as if they were falling off the table.
They began preparing for surgery (all this time I am open and bleeding) and start putting a mask over my face. This was the only time I actually thought I might die. I am very very rarely sick, but I at that moment felt I was going to be sick and seeing the mask descending on my face I thought, this is it, I know being sick under anaesthetic is not good and I am going to be sick. So amidst all the other things I was shouting, I began repeating ‘I’m going to be sick, I’m going to be sick’. In fact it was oxygen they were going to administer through the mask, but no one was explaining to me what was going on and I had thought it was the anaesthetic to knock me out. At that point, again from statements after as part of the internal inquiry, we learnt that, as I was already part cut open they were not able to intubate me for the general anaesthetic and so the surgeon had no choice but to proceed until the baby and placenta were out. They called Rupert back in. He had been weeping outside the door, no idea what was going on, but he could hear me. Luckily he was called back in, although it was distressing for him and he suffered mild PTD for a while after, grinding his teeth at night, at least I had another witness to it. They had to simply forge ahead. The surgeon’s number two had to physically hold my stomach apart. Again my muscles were responding to the pain and the medication had not resulted in the relaxation that would normally enable an easy delivery.
Ella was 9.1Ibs, so not a small baby and I am 5.3ft. This probably made the task of getting her out longer. All the time I am still shouting that my legs are falling off the table, no one is talking, presumably themselves in some shock, Rupert is at my head when they eventually deliver her. I had a moment of consciousness when they passed her to Rupert. We had been convinced she would be a boy so to have a girl was amazing and she seemed so big. Rupert held her by my head so that I could see her. I remember saying ‘She’s so big, she’s so big!’ and then, once the placenta was out, I lost consciousness as at this point they give me medication they could not give while Ella was still attached. I missed the next hour or so. From the moment they started cutting into me up to Ella’s birth, it had taken 26 minutes. Over the next few minutes they began the job of sewing me up. They chose to do this by removing my womb and placing in on my stomach to sew it up, which we were told, is apparently something they do sometimes. Rupert saw all of this and thought I was having a hystorectomy. I was during this time, sick in my mask, but with no one at my head except Rupert, it was he who had to call to them that I was being sick. As soon as they pumped me with whatever it was that made me lose consciousness, from Rupert’s perspective, I simply rolled my eyes and as far as he knew, could have been dead.
They finished sewing me up and rolled me into a recovery room. Rupert, who by this time had been up for over 36 hours with a couple of hours of sleep in the middle before I went into labour, had to work out how to dress Ella. He was distressed and in total shock. He had not been involved in packing the baby bag, he had no idea what was in it and a midwife helped dress her before they brought her to me. Luckily someone helped make sure she latched on early on, which helped breastfeeding as I was in no fit state to work out what to do. I was semi delirious when I first woke up and remember calling the midwife with my call button as I thought Ella had 6 fingers. Funny now, but shows how out of it I was at that time.
It was very hard for us in the early days to know how to respond to the congratulations of family and friends. What had happened was unspeakable and we were in no state to repeat it, we had not processed it ourselves and this took us many many months. It was difficult also to be part of conversations where other new mothers talked about the various difficulties and complications of their experiences. I simply stayed quiet, mine was not a difficult birth it was an operation that had gone wrong, which happened to be for the birth of my child. It was not tea time conversation. Nor did I have friends who had even been pregnant. I remember for many years actually feeling lonely in this regard, I need to discuss it but it needed to be at the right time with someone who would help me relive it. Rupert and I did not actually discuss the details and emotions we had felt until a whole year later (on Ella’s first birthday).
It took us a long time to get any kind of acknowledgement that anything had in fact gone wrong, and 2 years before there was an inquiry of any kind. Ella was fit and healthy and really so was I, except for severe anaemia from the massive blood loss and bruised insides and stomach. We were not out to sue the NHS. At that time they were under such constant pressure and concern that this might happen, that they responded in a way that made an early and open examination of what went wrong almost impossible. Things have changed dramatically over the past 19 years even though all is not perfect, but the defensive medicine and fear of acknowledging mistakes makes for little opportunity to learn and improve. Reflection of clinical errors and incidents in an open and safe manner are the only way that these might be avoided in the future.
In practice, there were a number of unfortunate events which together resulted in this outcome. No one deliberately wounded me but their fear of being sued and of the behaviour within their own professional hierarchical systems was not conducive to an open and inquisitive review of why this happened. It amazed me at the time that, had we not pushed, it was not clear that anything at all would changed as a consequence of this. I probed once and was told that they did have an internal system of logging serious clinical incidents. Aha! I said, then you admit there was an incident, and so in your view what was it. As it was mine was not initially logged as the indicator that would have been used to trigger this system was the amount of blood loss. If blood loss was over 1000ml then this would constitute a clinical incident but in my case, apparently, I had lost 950mls. Hmmm….does anyone smell a rat. How would you estimate a loss of 950mls compared with 1000mls when it is all over the floor?
The first response to a long letter Rupert wrote to the Trust received a response which began
‘Dear Mr and Mrs Howes, We are sorry that your birth experience was not what you had hoped for…’. I think they were mixing up a birth and an operation that went wrong. Do you think they would have said that had I been having my appendix out….’I am very sorry your appendectomy was not what you were hoping for…’.
With the help of a group called the Association for Improvements in Maternity Services (AIMS www.aims.org.uk/) we slowly and systematically gathered the evidence, worked out how the system worked and actually built relationships with the hospital, which partly helped with the discussions as I think they began to trust we were there to find the truth to avoid it happening it again and for our own ‘closure’ as they say in America, and not because we were going to sue them. There was eventually an internal inquiry and there came a point after which we felt all that could have been done and learnt had been. I was by then pregnant with Tom and focused hard during his pregnancy to learn as much about managing my own labour through breathing and other techniques so that I could avoid unnecessary intervention and would not need to resort to other forms of pain relief (I do not count TENS machines or gas and air in this). Tom’s normal birth almost 2 years later exactly was a great healer. I avoided a c-section. I managed a normal delivery supported by a brilliant team of midwives and we had gone as far as we could in accepting and moving forward from Ella’s birth.
It was this experience however that then framed my future career, professionally and as a local activist and advocate for improvements in the quality of maternity services. I joined the group AIMS, which had helped me so much, and was their Secretary for a few years. AIMS was established in the 1960s and initially advocated to end routine pubic shaving and routine episiotomy, entirely unevidenced based, painful and unnecessary interventions which women for decades were subjected to. It is also in large part thanks to their efforts that fathers were eventually allowed into the labour room and women were not forced to deliver lying on their backs.
I then joined and ultimately Chaired the local maternity services liaison committee (MSLC), which is a statutory group established to bring users and service providers together to improve local services. After about 10 years in these roles I joined the then Primary Care Trust as a Non Executive Director, and through this hope I played a part in efforts to improve local services. Brighton and Hove at the time of William, my thirds birth, had one of the highest home birth rates in the country. I am less in touch with services locally now but it was the focus of a good part of my life. Alongside this I began a PhD. I was at that time trained as a demographer. Demographers are concerned with population and what makes it change, fertility, mortality and migration. My interest has always been in reproductive health, safe pregnancy and childbirth. In my Phd I focused on Quality of Care in Maternity Services, in this case in low resources settings (urban slums in India) - but the principles remain the same whichever part of the world you live in. And so began my career which I continue today working to support improvements in maternal and newborn survival in parts of the world where women and babies continue to die at rates and in ways we experienced over 100 years ago. Preventable deaths during pregnancy and childbirth are an outrage in the 21st century. I pinpoint the passion for this work from Ella’s birth. It opened my eyes and forced me to become my own advocate to start with and ultimately an activist for others. During this time I learned everything I could about what constitutes high quality care, why care falls below certain standards and what can be done to improve this. More about this in a later blog.
It is hard to believe it is 19 years since this all happened. We were so thankful that at no point did Ella seem even the slightest bit distressed, she was calm and together, not a blip in her heart rate, just as she is today. And through what could have been (and was to an extent) a tragedy came a passion and a drive which has consumed me ever since. I see this cancer as another such a moment. As with Ella, I knew very little about the politics and reality of care provision that could result in the experience we had. With my situation now my eyes are being opened into what I am certain is not an environment which is delivering good access to treatments and care options to people with advanced cancers. With poor maternity care, which many have experienced, women are often unable to engage actively to stimulate improvements as they are grappling with the challenges of a new baby. With advanced cancer, people can be too ill, too scared and too confused to challenge what is on offer and not around long enough to keep the pressure up for sufficient time to make the difference. We need groups like cancer research to take on some of this challenge and really advocate for patients. And we need the voices of patients themselves and their families to rise up and rattle some cages. Something needs to change - I am working my way to understanding the what and how and identifying individuals and groups who came to this conclusion a long time before my own epiphany.