Chapter 9 Day 2…

Chapter 9 Day 2…

I don’t remember everything about that first night in QAH.  I remember the shoulder tip pain that no one had warned me about.  I didn’t sleep because of this and the fact that my baby was down a few corridors inside an incubator being shaken by a machine that was keeping her alive.  It felt as though I was being stabbed in each shoulder.  That was the physical sensation.  But if I am completely honest, my chest felt heavy.  My heart was aching and I recognised this sensation from when my auntie passed away.  It was grief and my right hand instinctively went to my heart and rubbed it.  This happened for months after my Auntie went, it was a comfort and somehow it eased the pain. 

I’m not sure what happened in the morning of day 2.  It is likely that I showered.  I like to be clean.  I’m not even sure if my mum came that day or the day before.  I’ll get James to clarify that.  I know that mum was there at some stage though, because she spotted a consultant she knew and warned me that she could be a bitch.  Mum is good like that, she’s usually a shit hot judge of character and I trust her implicitly with this.  However, she is also like a bull in a china shop and it probably would have been better for me not to know that the Dr in charge of my little baby girl that day, was that Dr (who I will refer to as Dr C through the blog).  Mum knew Dr T, the man with my dad’s face and she liked him.  When they saw each other I noticed a genuine look of respect for each other and I was sure then that my baby girl had the best Dr overseeing her care, even if Dr C was in charge for that day.

Dr T told me that he thought Betty had a problem with her thoracic duct.  I remember that, I recognised those words.  He said that on day 1 or 2, I’m not sure, but hey, he was bang on!  The other piece of diagnostic information I received from Dr T was that Betty had a condition called Hydrops.  Thankfully I didn’t even think to google this.  If I had done that so early, god only knows what would have become of me.  Have a look for yourself and you’ll see what I mean.  I even told mum that “I think the Dr said she has Hypox or something”.  Mum knew what I meant and her voice sounded a little shaken. 

I remember being on the phone to my sister that day.  I remember I told her they were going to put a chest drain into my little girl, Betty May Woolridge (we named her that morning).  And that Carol had said if babies are ‘very sick’ they get shipped out to Southampton, I took comfort in that, as Betty was still in Portsmouth so she couldn’t be that sick, surely.  During that same phone call Dr C came to my room and told me they were going to move Betty to Southampton.  My shattered world, in that second, came crashing down all around me.  I struggled to breathe.  I needed someone to take hold of me but there was no one there.  Just a desperate big sister on the end of the phone.  Helpless.  Just like me.  I don’t know the actual name of Dr C and I understand that her decision to move Betty was 100% in her best interest and the right thing to do.  But in such a short space of time I had become comfortable with Dr T and I wanted him to look after Betty.  If he could have worked 24/7 then maybe Betty would have stayed with him.

James had taken his mum home so I was alone when I was told about the transfer.  His mum had visited that day and she had popped in to see me.  I vaguely remember it, I know she said something nice to me, she always says something nice.  She is kind and thoughtful like I already said.  She was a magistrate for 40 years and she has an OBE which is impressive.  She also loves shopping and bargain hunting, much like me so we have always gotten along really well.  We go Christmas shopping every year and we both love to gossip so when the men are out of the way (James and his dad don’t care much for idle chatter!) we both have right old natter!  Of course James knows nothing of our gossip (unless he reads this!). 

I told you all about my sister and sister in law getting pregnant around the same time as me and how this made me feel (at the time, I really need to stress that!!) and the reason I told you this is because it is part of this story, my story.  This is my blog and as well as helping others, I am doing this for me.  All those named in this blog have been asked and given their consent for their names to be used.  And so, this means that I have sat and spoken to Sue about how I started to feel immediately following the arrival of my little girl.  My inner voice was taunting me, telling me that my baby would love Sue more than me because I had failed her, my body had failed my baby so she would never love me.  I know it sounds mad, but that’s how I felt.  I was convinced Betty would be taken away from me.

When I was pregnant I had pinned all my hopes on James’s family making a fuss of my baby as my family had three babies to divide their affections over and James’s would only have our baby.  I cannot explain what happened or why it happened, but I started to feel completely overwhelmed and threatened by Sue.  This took me by complete surprise as we had always had a good relationship (and we do now).  There were so many thoughts running through my mind and I didn’t want to talk to anyone other than James, Carol, my sister and Fluff.  I didn’t know what to say to people.  I knew everyone would have questions and I didn’t have answers, I was terrified that someone would ask a question that I hadn’t considered and scare me even more. I felt the same about Sue.  I just wanted everyone to go away and for all of the madness to stop.  I was gutted that I felt this way, but it wasn’t at the forefront of my mind so I just rolled with it. I am fortunate and grateful that Sue is open minded and understanding and I am thankful for that, it supports my belief that honestly is necessary in most situations (I draw the line at telling someone they look fat on their wedding day or that their new super short hair cut is not the one…..!).  

Sue (James’s mum) has two sons and one grandson so having a granddaughter was always going to be a delight for her.  But having such a sick baby had never been a consideration for her, or any of us.  I’m not entirely sure Sue ever fully grasped how bad the situation was and this is no fault of her.  I had told James to keep details of our little girls condition as private as possible, at least until we knew what was wrong and if it was treatable.  So until this day I am not sure what she knows.  And this is likely why she has asked questions that upset me.  I know she would never intentionally do this.

Anyway more of that later.  James had received a call from Dr C telling him that Betty was to be moved to Southampton as a matter of urgency and he headed straight back to QA.  I was told by someone that I would be transferred to the Princess Anne hospital with Betty and I would be a patient there until fit for discharge.  James tells me that the reason I was advised against hospital transport was because in an ambulance I would have to be layng down and with the pain from the C section and the shoulder tip pain, I couldn’t lay flat.  So, my big brother came over to QA to take me to Southampton and James went in the ambulance with Betty.  This was the plan that had been made for me. 

James and I were able to go and see Betty before she was moved.  The process takes a long time because they have to put the baby into the transport incubator with all the machines and monitoring and make sure that the baby is stable before being moved.  They leave the baby in the transport incubator for about an hour before they leave.  Betty was being prepped for this big move and there were a lot of people around her.  I didn’t know who was who or what the hell was going on.  A kind looking Indian lady approached me and said “your baby has about a 50/50 chance of surviving”.  Those ten words bounced around my head for weeks.  She was so blunt in her delivery.  There was no sitting me down in a quiet room.  It was just there, BAM, in my face.  James was talking to other people, the transport people I think.  They sent a consultant over, that was the Indian lady that had delivered the earth shattering ‘50/50’ bombshell.  They also had an advanced practitioner, a driver and I think some other people, I don’t really know (what a surprise!).  It was like a scene on Casualty, all the beeping of the machines and the bright flickering lights, the flashing of screens, the lights from the phototherapy lamps, the lighting in the NICU.  Everything felt too much.  Sensory overload. The people talking as if in code, all this technical medical jargon.  It was all too much, too busy, too loud, too bright, too painful.  My heart was aching and racing.  Such a strange combination of feelings.  I felt like I was dying, at least how I imagine it to feel.  This great weight on my body and the fuzzy haze in my head.  Why was my baby so sick?  What have I done?  Why is this happening to me?  Am I that awful that I deserve this?  I had all of these and many more thoughts whizzing through my mind as well as the words of the doctors…..”Your daughter is seriously sick”, “the next 24 hours are critical”, “she has a 50/50 chance of surviving”, “we’re doing all we can for her”.  It was just too much.   

I went back to my room and James stayed with the transport people.  I waited for my big brother.  Swollen, in pain, confused. 

I remember my brother being there, sitting on the chair in the corner of the room.  He wasn’t his usual self, normally he’d take the piss out of me, make some joke about my tattoos (which he has never approved of!) or laugh at me for something.  But this day was different.  It was other people’s reactions that I was starting to notice and my brother was one of the first.  I think I was quite rude to the junior Dr that came to do my discharge/transfer bit and my brother would normally pick me up on this, but he stayed quiet.  It was obvious I was irritable and I wanted to just go, I wanted to be in Southampton where my baby was heading.  The Dr said my abdominal pain was not related to the C section…..I just rolled my eyes, I mean come on, FFS! I ticked the boxes and eventually they let me go.  I think I walked/hobbled to the lift, waited patiently in the entrance for my brother to drive round to pick me up so I didn’t have to walk too far.  I remember that night, it was raining really hard.  My brother is a police officer and so I felt completely safe in the car with him.  He avoided any bumps and it was a very smooth journey.  We talked, I have no idea what about though.  But he got me there, my big brother, everything I needed that night.

Chapter 8 The blur begins

I think at this point I must introduce you to my inner dialogue. You know that little voice we all have, the one that nags you all day at work asking ‘did you actually turn your hair straighteners off?’ or ‘I’m pretty sure these are the jeans that give you really bad VPL…’. Well that little voice changed drastically the moment my little baby girl was taken from my body. The word taken is significant because this fear of her being taken from me continues to taunt me on a daily basis. You may be thinking, Mandi your baby was taken from you in order to save her little life. And you are of course absolutely right, and my ‘reasonable mind’ knows that. The trouble is, like many of us, I am ruled by my ‘emotional mind’ and it is this part of me that controls my little inner voice. I started to feel completely out of control, of everything. I had planned a calm, natural birth. James and I had been having private hypnobirthing classes and to my surprise, I had actually started to feel relaxed about labour. I was excited about it. I wanted to experience it for myself, because in my naïve mind, I thought this would entitle me to being a ‘proper woman’.

I hadn’t heard of hypnobirthing before I discovered Danielle. Danielle is a midwife, young and pretty and full of optimism and charm. As I said, to my surprise I had become comfortable with the idea of labour and I was looking forward to it. This is all credit to Danielle. People that know me were flabbergasted that I was engaging in hypnobirthing. I took pride in telling other people about it. Like all expectant parents, I just wanted the very best for my baby. I was excited about the ‘skin-to-skin’ contact that I would get immediately after the birth, to really secure and initiate that bond with my little one. James and I had discussed that should I be unable to do this (for whatever reason), then he would have the first ‘skin-to-skin’ contact.

Actually, on the morning that this happened, Danielle was on shift. I do remember that. I remember seeing her face, in uniform, with her own little bump appearing (she was pregnant). She looked as stunned as I felt. I just looked at her and said, I think the water birth is off. She smiled, but the nervous smile, we all know that smile.
The main points about hypnobirthing that I had really connected with, was that I was in control. I had been taught about the different stages of labour, what to expect, what drugs may be offered. I was ready. And then this was taken from me, see, taken. People kept taking things from me and I started getting intrusive thoughts about what people might do next. These thoughts and that little voice are still with me, but I have much more control over them now, although I don’t have complete control and that can be scary.

With the help of James, Carol, my sister and Fluff I will piece together the weeks that followed that day. I call it a blur because it is. Thank god for the care assistant that told me to buy a little book and jot things down each day. Without that I wouldn’t have my own little reminders of what happened.

Out of theatre

I was taken to recovery briefly before going back to the ward and again the man with my dad’s face appeared (Dr T), to tell me my daughter may not make it. I am sure Dr T was much gentler with his news delivery, but I don’t know what was said exactly. I think I just nodded again. I had started to accept that my baby was going to die. I wasn’t me, I wasn’t really there. I was sort of watching me and I felt sorry for me. The desperate sadness was starting to hit me.
Back on the ward and in a side room I was approached by a lady who was talking about breast feeding. Talk about mixed messages. I didn’t question it at the time though. I just kind of, took the syringe and teaspoon and started to try milking myself. Still shaking from the spinal and my head obliterated, not knowing if my baby was dead or alive and not knowing really what the hell had just happened. I sat, slumped and tried my hardest to express something so that if my baby was alive, she could at least have some of my milk.

James has just reminded me, by asking “don’t you remember what that lady brought for us?”. Obviously my response was no. He reminded me that the boob lady had brought a photo of our little girl. Our first photo, in a cardboard frame. Something to look a while I tried to squeeze the tiniest drop if milk out of my little boobs. This did nothing for me by the way. Looking at that picture didn’t fill me with love and force my breasts to explode with oodles of milk and gushing wonderfulness…….I looked at that picture and saw what (to me) looked like a dead baby. My poor little girl, fighting and struggling already. It wasn’t fair. I did everything I was supposed to, this should not have happened to me. However, emotions aside, that picture is significant now. James has just reminded me that it is in her memory box along with ECG leads and hospital name tags. Actually when we were leaving the House, James noticed this photo had fallen down behind the build in drawers in our room. He spent an age carefully removing drawers and returning them to their original position in order to retrieve this photo.

I was made aware that our little girl was alive and I was desperate to see her but I couldn’t move so James went to the Neonatal Intensive Care Unit (NICU) to see her. I don’t know how he did it or even how he coped on his own. I have never asked him. Maybe I’ll ask him. I couldn’t have seen her on my own like he did. I needed James then more than ever to hold me up, in so many ways, not just physically.

James came back to me and told me that our baby was “lovely” and neither of us can remember much after that. The next thing I do remember is the Irish midwife helping to force my numb legs into the wheelchair so that I could visit my baby. The rules are that you can only go in a wheelchair to see your baby once you can weight bear. I could not weight bear but the midwife was one of those real human types, a bit clumsy and very un ‘PC’ but that works well for me. Between her and James they forced my dead, swollen legs into the wheelchair and off we went to see my baby.

When we arrived at the NICU, James pushed me through the doors and I looked to my left, I counted 1, 2, 3, 4, 5, 6…6 incubators I think I counted. But guess what..? I had no idea which one had my baby in. What kind of a mother did that make me? I didn’t even know what my baby looked like. I knew she was bigger than your average pre-term baby, but that was all I could recollect from the image in my head from theatre. James wheeled me over to the first incubator. It was vibrating and was loud, louder than I had imagined the equipment being. I saw the man with my dad’s face, Dr T. He had no mask on this time, I could see his mouth and he had a wide smile but a serious face. He was kind and he spoke softly to me. He clearly knew how to speak, he pitched his communication perfectly to my needs that day. He explained that our little girl was on a thing called an oscillator. An oscillator is a type of ventilation used in preterm babies as it can reduce damage to lung tissue by delivering very small breaths very rapidly to the baby’s lungs (180 to 900 breaths per minute). This is of course a very basic explanation of oscillation ventilation in preterm babies and if you’re interested then I urge you to read further on the subject.

I asked if I could touch my little girl and I was shown how to carefully open the incubator doors. I stroked her arms, legs, hands. I whispered into her that I loved her so so much and that she was a strong little girl who was loved beyond imagination. I put some music on my phone, something we had listed to through the pregnancy (River Dawn, a hypnobirthing piece of music) and I sat there, staring at this blue ish swollen baby girl. I was not struck by an overwhelming sense of love. That would be the wrong word to describe what I felt in those early moments with my baby girl. What I felt was an enormous sense of protectiveness. I looked at her, her body shaking from the ventilator, tubes coming out of her mouth, belly button and hands, cables and leads on her chest and feet, and I thought, how the fuck am I supposed to protect you? I know that I will, I know that I will go to the end of the earth to save you from pain and suffering……except, I can’t can I? Because here you are in front of me, suffering, and there is absolutely nothing I can do to stop it. I was lost. I was starting to realise how very lost I was. I couldn’t be a normal mum. So what exactly was I? A mess. The beginning of the mess I became.

Chapter 7 “We’re doing all we can, your daughter is really very sick”

Laying back with the help of the theatre staff I felt my body start to tingle and heat up from my feet, up my legs and all over my body. The kind anaesthetist sprayed me with ice cold stuff to check if the spinal had kicked in yet and it had, I could only feel above my boobs. It was a weird sensation, totally unable to move or feel my body. James sat to my right dressed in theatre clobber, I don’t know when he got changed. I remember hearing people say their names, job titles and this went on for a long time. I realised at this point that there were an awful lot of people in that theatre, maybe 20 or more, I couldn’t see as the screen was up. They then started counting in a strange way, 1, 2, 3, 4, 5, 1, 2, 3, 4, 5, 6, 7, and so on. I was later told that this was routine checking of equipment that they do before and after any surgery. Makes sense so they don’t leave a scalpel in your belly I guess.

Once things started there was little chatter. The anaesthetist spoke to me, told me what to expect sensation wise and was just nice, a calm and soothing voice which I assumed was her way of distracting me. I played along with her and tried to feign a calm and together demeanour, but that didn’t last long. James sat calmly next to me. I felt a big pushing sensation, I didn’t like it whatever it was, it made me feel sick. I didn’t realise it was the baby being pushed out of my belly. Then there was hustle and bustle, movement of bodies, some hushed chatter that was inaudible to me. The sweet midwife that had come to theatre with us told us we had a daughter. I hadn’t told anyone, not even James, but I had desperately wanted to have a little girl all through the pregnancy. When they said I had a daughter, my instant thought was ‘I got what I wanted and now she’s being taken from me’. There was no crying. I remembered in that moment Rachel’s words, that her little girl when born didn’t cry. She didn’t cry because she wasn’t alive. I was convinced that my little girl wasn’t alive. The midwife said that not all babies cry when they’re born. I didn’t believe her, not for a single second.

What felt like an eternity passed. All I could see was the left side of James’s face and I could see one tear rolling down his cheek. I asked him what he could see and he said he couldn’t see much but that the staff all looked calm. He said ‘they look calm princess, they look like they have it under control’. I had no idea what he was watching and I didn’t know for several weeks. I didn’t need to know and James is great like that. He completely understands me, even in that situation that neither of us had ever imagined, he still knew what to do.

After what seemed like forever, there was movement in the room. A man with a face similar to my dad’s, appeared over me and behind him I saw an incubator looking thing with what I assumed was a dead baby in it. I thought to myself, why the hell are they showing me this dead baby, my dead baby….? I thought I would be able to hold her if she was dead. Rachel held her little girl when she had died so why are they taking mine away. She had a tube coming out of her mouth and she was big, swollen and purple/blue in colour.

The man standing over me said “your daughter is very unwell, we need to move her now to treat her”. I just nodded. And then sobbed. I think James did too but I can’t remember and I am now going to stop typing and go and kiss my little girl because these memories are very raw and very real and every second of every day these moments taunt me.

Chapter 6 Saturday 26th May 2018

On arrival to the maternity unit we were taken through and rigged up to the standard monitoring device. From my understanding, one monitors the baby’s heart beat and the other checks for uterine movement or contractions (but I’m not a midwife so I don’t know for sure). From what I could make out from the chatter of the midwives, I needed to ‘meet the criteria’. I don’t know what this was but it was clear there was a time frame for it. I did not meet the criteria and so they left the monitors on me for 2 hours and by this time, I had met the criteria. The pain in my back was intolerable and I was constantly shifting and moving which encouraged eye rolls from the midwives who would rather I sit completely still for two hours with a bladder that felt the size of a pea and pressure pushing down on it constantly. I had to use a commode several times so that I could keep the monitoring device on whilst using the loo. A couple of midwives looked a little dissatisfied with the monitor’s results but it was clear that their protocol was to send me home as I had met the criteria. However, a junior Dr did examine me as they staff thought I was in labour because the monitor had picked up some ‘tightening’s’. No one seemed remotely phased at the fact I was telling them I could feel nothing. NOTHIING. Not my baby, not any muscles tightening. Not a single peep.

This junior Dr said something along the lines of, ‘come back if you’re still worried’, which I took to be simply a polite departure. However, James took this much more literally and thank god he did. We went home that night and I planned to go to work on Sunday. When I woke Sunday morning, James asked me how I was, how the movement was. I told him there had been no change at all and that I was going to work because the hospital had said the monitoring was ‘normal’. James was clearly worried and when he is worried I know there is good reason and so I made a call to the duty manager and went sick. We headed back to QAH and were once again hooked up to the monitors. Again, the monitoring was inconclusive. One midwife suggested that ‘the baby is probably just squeezing the umbilical cord and that’s why the heart rate keeps dropping so drastically’. Now, had I been a general nurse, I may have had some insight into this, but as a psych nurse, I know very little about pregnancy and what is normal behaviour for a 35 week foetus.

I was seen very briefly by a registrar who I caught a glimpse of. He was looking at the monitoring results and he didn’t looked impressed. He decided to admit me to the ward to continue monitoring overnight. What seemed completely bonkers to both me and James was that we were in a room directly opposite the sonogram machine but were repeatedly told “no one can scan you, it’s a bank holiday’. One of the midwives booked me for a scan on the Tuesday (May 29th) morning but me and James were not satisfied with that, it was becoming clearer as the monitoring continued to show inconclusive results, that something was wrong with our baby. James arranged for us to go on the bank holiday Monday to London to have a private scan, the closest one to us and open on the bank holiday. I felt actually, as if the staff thought I wanted a quick scan and that’s why I was reporting reduced foetal movement. I had heard of people doing this in pregnancy and I think it’s disgusting. To lie about the wellbeing of your unborn, that’s just not ok. But I guess the midwives see all sorts so they may judge. I don’t know, I’m going on pure gut feeling with this.

Anyway, so I stayed in on the Sunday night and had the monitor on all night, so I didn’t really sleep. There was a woman next to me, she was expressing milk for her baby that was born preterm but at this stage in my journey I had no idea what this really meant. I just smiled and made the right sort of noises when she said things. That night I was texting a work friend, I was keeping her up to date with what was happening, I was quite relaxed because I even told my work friend that the Drs were considering inducing me the next day, this had briefly been mentioned amongst many other maybes.
When Monday morning arrived I was reassured by another Dr that I would most likely be going home with nothing to worry about and so I called James to come and collect me. At 08:50 a consultant obstetrician came to see me. He looked at the monitoring paperwork and said ‘this all looks normal to me, I am not worried, but as I am here, I will scan you before you go home’ (this is my memory of what he said). So the midwife who was with me at the time came into the scanning room with me. The Dr had two juniors with him. When he got a clear image he laughed and ushered his colleagues closer to the screen, saying to me ‘I’ll show you in a minute, I know what the problem is now’. He looked happy, gleeful even, so I didn’t worry at all. He turned the screen to me and pointed to what he told me was the chest area of my baby. He said ‘you see this, pleural effusion, and this ascites (fluid around the abdomen), it is fluid, lots of fluid and you can see the lungs and heart are squashed’.  I felt like I was back at uni listening to a professor describe a diagnosis.  It was surreal, and maybe that’s when my head started to fill with fuzziness. 

I know what a chest should look like and my baby’s chest was not normal. The entire right side was black, full of fluid, pushing her lungs and heart to the left side of her chest cavity. Her left lung was pushing around to her back and her heart was hardly visible due to being sandwiched between her lungs. The fluid was pushing her vital organs out of their original positions and her heart was not able to beat regularly. This is why she was not moving inside me. She couldn’t move. And the Dr told me if I had waited for the Tuesday scan that they had booked, my baby would have died. Her little body was literally stretched to its limits. Oddly, so was I. I was so full of fluid but the professionals don’t think this is linked to what happened to the baby. Now, I had just recently completed anther part of the masters which was in physical health examination and so I had learned a lot of these terms. I knew what they were, and given how happy the Dr appeared to be, I stayed fairly calm (fairly calm ish…). Until he said ‘we need to deliver you today’. When I asked if that meant induction he replied ‘no, you and your baby won’t survive labour, we need to deliver you now’. And with that the hustle began. James had arrived by this time and when I saw him I burst into tears. I told him I had to have a caesarean right away and he said ‘ok, its ok, it’s going to be ok’. And typically I said, ‘you don’t know that’.

An hour and a half later I was in theatre being spoken to by a very lovely anaesthetist. She was explaining things to me, she had a kind face and she was young. I only remember her telling me to curve my spine. I remember that and the weird sensation of the spinal going in. I remember pinching James’s arm hard. Leaning on him, physically and emotionally and little did I know this would become the norm for us for the next 5 weeks (and beyond if I’m honest!).

Chapter 5 Twickenham

On Saturday 26th May 2018 James and I set off to Twickenham.  I had bought him tickets to the rugby final for his birthday and we had been looking forward to it since January.  It was a mega hot day which was uncomfortable for big swollen me, but I just went along with the day, trying not to moan and ruin James’s birthday pressie.  We parked by Twickenham green and walked along to a café where we sat and had a drink.  I remember saying to James then that I hadn’t felt much movement from puffling that day so far, but I put it down to the heat and carried on walking to the rugby stadium.

I had noticed that over the past two weeks, my movements had changed but when I mentioned this to friends and my midwife I was reassured that “towards the end of pregnancy your movements change/slow because baby is moving down ready to come out….”  This is bullshit!!!  Movements are NOT supposed to change at all!  But being a first timer, I had no idea and I took the reassurance.  I assumed everyone knew better than me…..well, now I know that the only person to trust is yourself!  I now know that I know best!  Anyway, back to Twickenham.  

Unbeknown to me, I had bought pretty decent tickets, but on that day, this meant sitting in direct sunlight and the temperature was about 31 degrees.  Way too hot for me so I kept going inside to cool down.  I didn’t feel right but again, I blamed the ridiculous heat and we walked back to the car after the game which was a couple of miles but it felt like one of the long hikes we did in Alaska.  I was struggling but I just wanted to sit down so I kept walking, if I stopped it would be even longer before I’d be home.  I still hadn’t felt little puff move that day and was getting quietly very scared.  It was the first day that I had felt no movement at all.  James suggested getting some food before heading home and I quietly agreed.  Sitting with sunglasses on and struggling to manage one tiny slice of pizza (this is not like me at all!!) I started to cry.  I didn’t want James to see as he would worry and I didn’t want to make a fuss.  I thought maybe I was being dramatic as people always say I’m a drama queen (and I usually am!).  Once in the car and on the road to home, I started to cry again.  I didn’t let James see but I did tell him I was worried about the baby now.  Once home, I had a bath as usually the baby kicked when I bathed.  I tried that and a cold drink and nothing.  I called our local hospital and they told me to go straight in.  And so it begins…

Chapter 4 Why so nervous?

I have spoken to my friend Rachel about this part of the blog and about my anxieties during pregnancy. She knew why I was so scared. And she is happy for me to talk about her experience here. Rachel’s story is hard to hear but it is real and it happened to her and it happens more people than it should consideringg how advanced technology and medicine are.

(In 2014 in the UK: one in every 219 births was a stillbirth; one in every 384 babies died within the first 4 weeks of life  *Data from the Office for National Statistics, 2016).

This blog is about raising awareness, sharing life changing experiences and supporting each other. Please read with caution, this is heart breaking and talking to Rachel about this has been tough for me so I know it will be difficult for some people to read, but please try. Rachel wrote her experience down for me and she is happy for me to use her words here.

Being worried through pregnancy I understand is normal, but I don’t think other pregnant people have (at least not very many) watched one of their closest friends go through their entire pregnancy, expecting their first child, a little girl, and to lose her right at the very end.

When me and Fluff (Fluff is my best friend, more on her later) were 22, our other best mate Rachel got pregnant (she was 21). At that young tender age, I was perhaps a little naïve and we were all just excited. Me and Fluff even did a baby shower for our Rach, something I have since grown to hate and refused point blank to have one myself. This was the first friend we’d had that had gotten pregnant and it was a happy time for all of us. She was happy. Her parents were overjoyed. She had and still has a supremely close relationship with her own mother, they live together still (although Rach and her hubby live in an annex but it’s attached to her folks house). So, the idea of adding another little girl into this family was just a dream come true. She would be adored and loved and probably spoilt rotten, and rightly so.

Rachel’s experience is raw, torturous and painful. In Rachel’s words:

“3 days passed my due date I was invited for a sweep. Great, I was ready. I was swollen (extremely) and fed up. My BP was up and I had slight protein in my urine….. Here is where the me today is screaming at myself to go to hospital. But I didn’t and the midwife decided I was fine. Later that evening I had some niggles, I was so focused this that when I turned my bedside amp on (to which she’d always kick in protest to) I realised I hadn’t felt her. But everyone told me babies slow down during labour so that’s ok, right?

The next day (40+4) I went shopping (not before tapping my belly in front of my lamp 100 more times, feeling satisfied with a few twitches) still safe in the knowledge that ‘babies slow down before labour’ (this was the advice back then and is in no way todays antenatal world thank god).
I bought one last thing, a little cow comforter thing, and waddled my way off to a Dr’s appointment.
He placed the Doppler on my bump, swirled around vigorously with a desperate look before sending me for a scan. The Doppler once again placed on my bump and before he could tell me, my words were “I know, she’s gone”.

I received a phone call from her mum and I stupidly answered all giddy and excited, not a clue that I was about to be delivered a whacking great punch in the gut. Her mum simply said “no Mandi, it’s not good news”. I don’t remember the rest of that conversation, but I know I was told what had happened and it’s very likely that I called Fluff straight after to let her know. My dear friend went home that day, with her baby still inside her, and spent time with her family coming to terms with this devastation.

“I went home in a daze trying to convince myself it wasn’t possible. I was about to give birth for god’s sake, now you’re telling me I have no baby? How is that even possible? Still in denial, I arrived at the labour ward and naturally gave birth to my beautiful angel, Imogen, all 5lb 6oz of her. They weren’t wrong, there handy been a mistake. There was no new born cry when it was all over, there was no skin to skin, no grasping little finger or new born eyes gazing at me. I had laboured like any other mum. I screamed, I cried, I laughed at myself screaming and walking through trees in the haze of gas and air. I even worried that I’d shat myself!
I did it though. I was now given the title of mummy. For 24 hours I held her. I changed her and took photos of her in her coming home outfit she would never come home in. I loved her. I went home with a deflated bump, leaking boobs and no baby to feed. My heart physically felt like a weight in my body.
Empty arm syndrome became a feeling that would stay with me for the next 2 years. How I got through the following years I can’t even tell you. I just don’t know. I don’t know if I’ve forgotten or blocked it out….I know I cried every day, and for days I didn’t cry I relived it all until I did cry because I felt guilty for not crying”.

I remember as clear as yesterday her saying to me ‘the weirdest thing was the silence once she was out, you always imagine a cry, but there was nothing’. This is significant in my story also, so when I get there you’ll understand.
When I saw my friend after having Betty, I asked her if we were any good as friends back then. Did we really appreciate the gravity of what had happened to her? I am not sure that we did you know. Of course we were deeply saddened by what happened and our hearts went out to our friend, but did we really ‘get it’, I don’t know. When I think of the details, that my young friend planned her darling little girls funeral. I still can’t comprehend that. I don’t think I ever will.
My experience has made me feel much more able to connect with and relate to Rachel and what she went through, although my baby survived, there is something in the desperation, fear and love that pulls us together. As women, as mothers, as humans.
And she remembers her little girl, of course she does, she is a part of her family. Rachel has since had 3 boys and they’re all happy and healthy. But her first child is with the angels and knowing this put the fear of god into me during the pregnancy and our 5 week battle.

This is Fluff, me and Rachel (from left to right) we were in our early 20’s here.

Chapter 3 Pregnant

As I said in the intro to this blog, my pregnancy was fairly mundane. No morning sickness, no drastic changes to daily living except I needed to wee a lot more than usual. I carried on training at my gym (which is all carried out under direct supervision by trained coaches) and felt pretty good until later in pregnancy. So, the coaches knew I was pregnant and tailored my workouts to suit each stage of my pregnancy. I missed being able to complete workouts with the gruelling ‘finishers’ but I also understood that my body was changing and growing a little person and I accepted the changes reasonably well (except I hated my body and how it looked…..shock horror!!).

I mean I hated being pregnant. Hated it. I didn’t like being bigger than I was used to, I didn’t like not being able to just wear anything I fancied, I hated having boobs, they were painful and just ugly! I don’t understand women that love pregnancy but I guess we are all different, I like being a size 10 and I am not ashamed to say it! What I did love was what my body was doing. Week by week this little person was developing more and more and yet I was able to pretty much just go about my daily business. Work was a little tricky, as I work in a mental health crisis team and with that comes a degree of risk. To manage this I had very little direct patient contact which I am certain my male colleagues were somewhat disgruntled by. But again, I didn’t care! There was no way I was ever going to put my little person in any unnecessary danger.  In fact, the day I found out I was pregnant, I was on a late shift.  It was a fairly standard shift and me and a colleague went to see a patient in the assessment room.  Unfortunately the patient we saw was very angry and had a history of being violent to health care staff.  The patient threatened me and my colleague and I thought that was it, that was how I would lose this baby I had just discovered I had inside me.  Thankfully the patient was so angry that he stormed out of the room and me and my colleague were able to get away.  The colleague I was with is someone that I always feel safe with and even he was scared during that assessment.  It was that moment that made me stay away from direct patient contact for the remainder of my pregnancy.  I stuck to mainly night shifts so that I wasn’t too much of a burden on the team and if I have another baby, I will not do that. Night shifts and pregnancy do not mix well.

Throughout my pregnancy I was anxious about having a miscarriage. I would constantly be looking at statistics about miscarriage and how the risk reduces as the pregnancy progresses. I thought if my sister and sister in law are pregnant, surely something bad will happen to one of us.  I would go to the toilet every ten minutes to check if I had bled. But as my bump grew and grew I started to relax a little more. Once I hit 35 weeks I even posted a photo of myself on Facebook, something I had not done all pregnancy. Little did I know that when I took those selfies, my little puffling (we called the little person inside me puffling as it’s the name for baby puffins and we saw lots of these in Alaska!) was struggling inside me. Looking at those pictures now makes me feel quite sick, but I have left them on my social media pages because they are part of this story and they are a reminder to me to never get complacent again.

The picture here is what I sent to my friends on Christmas day to announce my pregnancy.  I was 13 weeks.

Chapter 2 Having My Thunder Stolen…

James and I had planned getting pregnant in a fairly pragmatic fashion. I do like a clear plan, contingency plans, lists and check boxes. The plan was simple, have a great big holiday before having a baby. So that’s what we did. I have a love of cold places, wildlife and mountains and after becoming addicted to the TV show ‘The Last Alaskans’ I was set on going there to explore. Thank god for the NHS always having overtime available because without that I’d never have saved enough to go, it’s pretty expensive over there as its only open May to September. They have to make their money so it stands to reason that it’s pricey. Also, where else can you take a tiny aeroplane and fly 100 miles into the wilderness and spend a day watching bears with incredible bear experts..?! It was truly the trip of a lifetime and I get giddy thinking about making our return trip, whenever that may be. So the plan was set, all my friends and family knew of said plan and off we went to Alaska for 3 weeks.

Can you imagine the confusion I felt when on return from this fascinating trip, I learn that my sister in law is pregnant. Of course I was happy for my brother and his partner, but still I felt  that my thunder had effectively been stolen.  I was supposed to be getting pregnant, that was supposed to be my big news.   A few weeks later I noticed my big sister (and mother of my niece and nephew) looked awful. I mean she looked like a ghost, and I know my sister. Straight away I said ‘you’re pregnant’. She denied it at first but she’s about as good a liar as I am at hiding my true feelings. I called bullshit and she confessed, stating she felt bad as she knew we were trying……I didn’t say so, but I thought, good, you should feel bad!  This was supposed to be MY thing!!!  Well, unbeknownst to her, I was also pregnant but I had no plans to tell a soul until that 12 week scan.

I hadn’t realised I was pregnant, not until James said over dinner one night, ‘it sounds to me like you’re pregnant’. I went and did a test right away and the result was one of those inconclusive ones, so I assumed it was negative and carried on with my evening. We had been officially ‘trying’ for 3 months. I had a period/ovulation tracking app, only a free one but it did the job. I thought I knew roughly when I was ovulating and had started to actually tune into my body for the first time ever. The next morning I did another pregnancy test, just to make sure as I was vaping and I did enjoy a glass of wine in the evenings. I was on a late shift that day. The test came up positive. POSITIVE! I took a picture of it straight away and sent it to Fluff and then ran downstairs to James. I had all these plans in my head of how I would tell him I was pregnant, but when it happened I just legged it to him and plonked the test down next to his bowl of granola. He is a man of routine, every morning he has his bowl of cereal, orange juice and expresso, and this day was no different. He looked at the test, looked at me and said ‘oh…..’ That was it. He wasn’t surprised, I had been moaning about the shower being too powerful and hurting my nipples for the past week and that my period hadn’t arrived that month. James is literally captain cool. I have never seen him panic. Not even when all this stuff happened, he never panicked. He is a calm and measured man. He is patient, kind and can be objective, even in the face of the most traumatic event in his life, he was the calm in my storm. My stable base, my rock, but I’ll get into this in the coming chapters.

Back to my thunder being stolen and to add another touch of salt in my ‘thunder stolen’ wound, my sister’s baby was due 4 days before mine. I mean come on!!! I was so desperate to have this baby and have him/her be the centre stage as the new baby in the family. And now my baby has to share the limelight with not just one, but TWO other babies. I’m being honest, as I always am, I was gutted. I felt I had done everything right. I’d sorted my career, did extra training to ensure I’d be employable in years to come, I’d worked like a slave on those god awful wards so that I could buy a little house and be financially secure. And these two just come along and big fat steal my thunder!

Eventually, with a lot of reassurance from my gorgeous pals and James, I came to realise that no one else mattered, that our baby would be centre stage and have their limelight because they were going to be our first baby. Our little miracle that we could spoil rotten if we so wished. And I knew that James’s mum would shower our baby with love and affection and our baby would always feel so very loved and adored, she’s just that kind of woman. Like a down to earth version of the queen, a classy woman that understands the world. The sort of woman you’d all want as a grandmother I expect. She’s thoughtful and caring and funny and a great shopping companion!  

So, Alaska is done and everyone is pregnant (big eye roll), just wonderful……

This picture is my sister-in-law on the left, then my big sister and then me.  I was about 26 weeks here so my sister was about the same.  My sister-in-law was almost ready to pop.

Chapter 1 My Mum/Carol

In order for my ramblings to make sense, I think it’s important to describe a little about my background and my family. This way, when I describe my mum interchangeably as Carol/mum, you’ll understand and even if you don’t, you’ll see why I do this. You see, my family is not ‘normal’ but to be honest, the older I have gotten and the longer I work in mental health, I have come to realise that there is no ‘normal’ when it comes to family. It seems every family has something a little quirky that separates them from the norms we grow up expecting our families to be. My mum, Carol, was a nurse and midwife, she gave up midwifery early on and I only recently discovered her reason for this. To my surprise it was because she couldn’t stand seeing and hearing the women in pain, she wanted to help them more than her role allowed.  She had trained as an adult nurse and then completed additional training to become a midwife and so she was able to move easily from midwifery into her post in the neonatal unit in Southampton. This is where mum worked for 42 years. So my childhood involved having a great awareness of the fact that babies are not all born healthily and that sometimes babies even die. My mum was always fairly matter fact about this, I think it was her way of putting a little distance between herself and the realities of her day to day work. Carol is a deeply compassionate and caring woman, although on the surface this is not the impression she gives! She is very direct, honest and straight talking (yes, just like me!). Carol is very knowledgeable and experienced in her field; children and babies being her speciality. Mum can stop a baby crying with a quick firm cuddle, rendering any bystanders redundant! Growing up with my mum was great in terms of learning some core values about life in general. She taught us to work really bloody hard, doing anything.  I remember her saying “if I have to scrub toilets in the evening or on my days off, then that’s what I will do, it doesn’t matter what you do, as long as you do something”. Fortunately as a nurse, mum was able to work nights, which meant she was home during the day and she was there when we finished school. It wasn’t until a little later that mum started working days in order to get promotions, to earn more money to keep us all at home, together. This is when mum found her feet as a manager on the neonatal unit. She acted up as manager for some time before getting the permanent position and then the long days really started. I missed her, I used to call her at work ALL the time and I misbehaved terribly at school. Everyone always said I was ‘attention seeking’ and its only as an adult that I look back and think, yes I was attention seeking, why is that such a bad thing?! I mean I could have gone about it differently to be fair, but I was a child and I didn’t know how direct my frustrations and the obnoxious teachers didn’t help. My behaviour at school caused mum a lot of stress and I am sorry that I caused her more sorrow, but as a child I had no concept of what was happening at home. It had barely dawned on me that dad had left the family home. When mum was working nights he was always theret and I never heard them argue except once when my dad said something insensitive and mum threw a lunchbox at him. She got him with it and I remember thinking, good shot mum. Mum and dad are like good old mates, they bicker, mum nags dad but dad is a wind up and their marriage is not exactly conventional, but whose is?! Anyway, enough of that, that’s their business and I don’t need to delve any further into that can of worms or I’ll end up starting another blog to discuss parents, and nobody has time for that.

I wanted to talk about Carol because she plays a significant role in the journey me, James and Betty went on. I call mum Carol quite a bit because as a child I was quite demanding of her time and I found that saying ‘mum, mum, mum, mum, mum’ just had zero effect on her. So one day I called out ‘Carol’ and she turned round immediately! Wahay! I had cracked it!! And from then on I have used mum and Carol interchangeably to get her attention. She continues to call me ‘Jay-Lis –Char-Amanda’ almost every time she calls me, so we are even on the name front (my brother James, Sister Lisa and niece Charlotte, I am the beginnings of all these names). What impresses me with this is that even though it is her getting my name wrong repeatedly, by the time she gets to Amanda, she sounds exasperated and gives me this kind of eye roll look, as if it’s my fault for having the name that comes last in her list!

So Carol, neonatal matron, dedicates her whole life to the unit and spends most of her home time dealing with work issues, and as time went on, so entered more politics and to be frank, bullshit of the NHS which she grew very tired of toward the end of her career. In 2016, after 42 years’ service to the NHS, my mum retired. She was showered with gifts and kind words and leaving parties and her Facebook page got a lot of attention. Now, I have always known that my mum is a bit of a legend but I had no idea that all these other people also valued her so much. And as much as she said she was ready to retire, I think there was a part of her that wanted to carry on nursing but sadly, due to the state of the system, she decided to fully retire and enjoy her garden and holidays.

Now in terms of closeness, I have never felt I have a ‘close family’ nor a particularly close relationship with any of them with the exception of my two cousins, Dan and Mike. I recall my dad once saying to me ‘Manda, she is your mother, not your friend’ and that is so true, it described our relationship perfectly. My mum is my role model, someone I go to for advice about career and finances but we never had a friendship like some people have with their mums, not until I was a fully-fledged adult and by that I mean when I was about 22 (ish). That doesn’t mean I love her any less, far from it. I needed my mums approach, I needed to know when I was being a twat and she would always tell me. She was and is my protector but with limits, if I am wrong, she won’t and never has argue my case, she would tell me I was wrong and she’d expect me to deal with it. Dad was always more soft than this but mum rules the roost in our family! She is a fiercely independent, strong and determined, hard working woman and I am pleased to say that I follow directly in her footsteps.

My mum had a sister, Christine, our beloved auntie who was cruelly taken from us in 2006 by that fucker we all know and despise, cancer. She put up a bloody good fight but when she got secondaries and it spread into her bones, eyes, lungs, her body could take no more. Mum and auntie had planned their retirement together, they were going to do all sorts together and so when little auntie was taken, my mum was crushed, we all were, but it hit Carol so hard. It was like watching my mum get beaten up by a heavy weight boxer. She was completely powerless, she couldn’t stop it, and it obliterated her heart. We were all devastated at losing our little auntie. She was a really funny woman, sometimes unintentionally! She was kind and generous. She had very little materially but she would give us all she had. You could always rely on little auntie for a decent Easter egg, the ones with the mugs and decent toys from Woollies! Somehow she never really fully understood what was happening to her with her cancer. One day she asked mum ‘am I terminal?’ and mum replied ‘we all are Chris’. And that was that. No explanation or morbid chat about ‘the end’, there was no need for that. We were all with her the night before she went, mum says the angels came to get her that night, and she passed the very next morning when mum had popped home to have a quick bath. So you see, my mum has had her share of heart ache, she isn’t void of emotions, but she can appear so at times and this has served her well in her long career.  

So there it is, a very brief introduction to my mum, Carol.