I’ve spent the last couple of days drafting up a blog post in my head, it’s not crochet related (sorry!) but I think if I don’t allow myself to sit and write for awhile that I may possibly spontaniously combust.
I had what I wanted to write planned out in my head, I haven’t been in touch with the real world much recently, so I haven’t seen the news or been on Facebook much. Tonight I had a quick lurk on facebook and someone had posted this link to the story about the bodies of a mama and her newborn baby being found. The person who posted it on Facebook was being very kind about post-natal mental health and saying that they couldn’t believe some of the comments and things that they were reading. It was only because of the kindness that was shown in her post that I clicked the link and read. And cement my need to write this post, here as opposed to just in my paper journal. I was going to write about this, but now I feel like I *need* to write about my experience, I may not help raise awareness, and I will probably be one in a lot of people who come forward and talk about their experience, and that’s ok, I just need it out of my head, and can’t not link to that poor mama’s story, and lead with the fact that I hope it does help readjust attitudes towards puerperal psychosis.
You’ve probably already read my I didn’t know what prematurity was post. I remember saying to my Aunt one day “I don’t know how you managed to have a second baby after going through having a prem baby first” she reassured me that you just do. (And her eldest was more premature than little H, which amazed me more that she braved a second!)
Just 2 weeks before little H’s 1st birthday I found out I was pregnant again. I only actually did a test because I’d had a huge meltdown after disembarking a stupid o’clock Ryan Air flight back from Tenerife only to discover that somewhere along the journey after handing the pram in as we boarded and getting off at the other end that it had been broken and I had a screaming tired 11 month old and I couldn’t put him in the pram whilst we queued for an hour to get through passport control. I went mental, and as we were at the back of the queue I think pretty much everyone turned around to watch me go mental. When we got in I did a test, and showed Mr B (It was a digital so no squinting for lines or anything) his response was “You could’ve waited until we’d gotten the first one to sleep before telling me that there’d be more sleepless nights!” I think I laughed, and cried, and got scared.
MJ’s pregnancy was different to Little H’s right from the off. The next morning I rang Mr G’s secretary, knowing that I would need to start the Clexane injections and progesterone suppliments if I hoped to have a sucessful pregnancy.
I remember the tears running down my cheeks when she said “He’s retired from Obstetrics now, but I can put you in touch with the consultant who is his replacement.”
We had an early scan on the 26th April 2011, the day before Little H’s first birthday, and there was a little Dot with a barely visible fluttering heart. I’d felt so so sick all morning, the fear of losing another pregnancy felt like a vice around my heart. I then had an appointment with Dr. A, she was nice enough but seemed to feel like the progesterone was like a placebo to reassure me, and was reluctant to prescribe, the clexane she prescribed, but at not even 6 weeks pregnant she wanted me to wait before starting it….. I refused, 9 weeks was the furthest I’d gotten with 0 blood thinners, 11 (ish) weeks the furthest on baby asprin. I was not willing to not start doing the injections ASAP, and to be honest, all I wanted was for Mr G to appear and smile and reassure me that I would get another take home baby.
The sickness started around about the same time, it wasn’t too bad, and I soldiered on, until I couldn’t anymore, and then spent the rest of the pregnancy taking anti-sickness meds. We had scans every couple of weeks until the 12 weeks, and the ladies in the Early Pregnancy Unit were so lovely, and so happy that Little H was doing well (they’d seen me so much over the previous 5 years and were keen to just do quick scans every couple of weeks to help ease my fears) and our Dot started looking like a little baby.
I’d usually tell you about weeks that things happened, but to be honest, I don’t really remember MJ’s pregnancy very well. So my story will sound a bit jumbled and not as coherent as I would like it to be.
I started having contractions quite early on, around 26 weeks I rang the labour ward and was asked to pop in, and lovely Lou the midwife who’d looked after me in the week before they delivered Little H, was on the labour ward, she checked me over, asked the questions, felt tummy, strapped me to the monitor and left me to try and relax and read a book and she’d pop back in to see how I was doing. I can’t even remember if there was a shift change, or a student midwife came to check the printout and they saw that I really was having contractions, so I was admitted.
Now, I’d guess that most people don’t know how it goes when you’re admitted to the hospital when pregnant and you’re on the maternity ward… I was set so every couple of hours someone would come with a little hand held doppler and listen to baby’s heartbeat, and first thing in the morning and after tea time I’d have half an hour or so strapped to the monitor so they could trace baby’s heartbeat and see if there were any contractions.
It was around this time that I noticed that quite often the midwives were saying “oh no, that’s mum’s heartbeat!” when they were doing the doppler/trying to place the monitor, they’d then spend a while looking around, feeling where baby was and eventually a satisfactory reading would be found.
A few times I tried saying that it wasn’t my heartbeat, it was baby’s, just that sometimes it went a bit slow (you spend enough time strapped to those monitors and feeling your own pulse when you’re unsure) I’m quite a polite person, so I didn’t push it. (my head was screaming out to, but the nice polite persons voice comes out of my mouth!!)
Around 29 weeks I was admitted to hospital again, I can’t remember why, more contractions, sickness to the extreme, panic setting in? And one night a bank midwife came round with the handheld device to listen to baby and did the whole “oh no, that’s mum’s heartbeat!” and internally I was screaming with anger, fear and something else (mama bear?!) and I said that it’s not my heartbeat, I’m not sure if I asked if I could show her and took the doppler and put it on the veins at the top of my leg to listen to my heartrate or if I directed her there, and then back to baby.
It was around 9.30, I was tired, I wanted to go home so so badly, I was lonely, I was scared, my head was so so noisy. I cried.
She listened though. She actually listened, she didn’t dismiss me, she listened, then let me cry it out at her, that no one has listened when I’ve pointed that out and I’m scared and the words just all fell out of my mouth.
Before I knew it the on-call registrar was there with a portable scan machine, with a tiny fuzzy screen (more fuzzy than the normal scan machines!) and I laid there, still feeling scared, but relieved, someone was listening to me. We watched Dot’s heart it’d do 4 beats and then pause for what seemed like an eternity, then it’d do a few more and pause.
The brakes were taken off of the bed and I was swiftly wheeled over to the labour ward. I just remember saying “if we need to deliver can we do it after midnight, I’ll be 30 weeks then!”
I was strapped to a monitor and a midwife sat with me, pressing down on the sensor that picked up baby’s heartrate trying to get a consistant reading from Dot’s heart. She reassured me that they’d only moved me over to labour ward because their equipment was more sensitive and they wanted at least an hours worth of charts before making a decision what to do next. All I could do was lay there, listening to the whoosh-whoosh-whoosh-whoosh-pause. Taking it in turns with the midwife to hold the sensor pad down because the pressure needed made your hands cramp so I figured it’s only fair to do my bit.
It was decided that I would have the first lot of steroids to help baby’s lungs develop and that I could do back to the maternity ward and try and get some sleep, they’d be arranging an in depth heart scan/possibly transferring me to Liverpool Womens Hospital.
The next day, the lovely bank midwife who’d meant to have been finishing her shift at 10pm but got caught up with me (until I told her to go home as the labour ward midwife was taking over!) came and apologised to me for causing a panic. I got the distinct feeling that someone had made her feel like she’d caused a to-do over nothing, when really, she was the only midwife on the maternity ward at the time who made me feel like I was being listened to.
The next few days were horrible, still I kept hearing “oh no, that’s mum’s heartbeat” I did get moved to a side room though, and Mr S was booked to do a heartscan. Lots of people rave about Mr S, he’s an amazing Obstetrician, but I’d had experiences with him previously, before Mr G took up my case of “why do I keep losing my pregnancies” and I wasn’t keen to be in a room with Mr S again, but the midwives reassured me that he was the best and, well, I didn’t really have another choice!
Scan time came, I laid on the chair, he put the wand on my tummy, took some screenshots and sent me back to the ward with a “baby’s fine.”
No explination as to why MJ’s heart was doing that, and very visibly so on the clear ultra new scanning machine he used. No reassurances that he didn’t feel like he needed to take any action at that time. Just “go back to the ward, you can go home!”
When I got back to my little side room I erupted into a huge mess of snot and tears. I didn’t feel safe, I didn’t feel looked after, and I felt like he’d just dismissed me because my baby’s heart wasn’t interesting enough for him to waste his valuable time spending 2 minutes explaining what was happening. A midwife came in (I want to call her Kylie, but I’m not sure if that’s her real name, I’d rather not use real names.. nevermind!) to check on me and explain that I was free to go home and saw that I was a wreck. She spent some time trying to talk me down but it didn’t work. She then tried the just basically tell me to stop behaving like a spoilt child approach (I’d bet a million pounds that it’s not written like that in my maternity notes!!!) and said she’d print off some information for me to read through and said she’d be back in a minute and left (she never came back) I even tried ringing Liverpool Womens to try and get my care transferred over to them, but couldn’t because I’d already booked in with my local team (well duh, I was 30 weeks pregnant!!) And my friend, who happened to be our local Bliss Rep was at the hospital dropping off leaflets/seeing new prem mums, and saw my name on the board and popped her head around the door, I think she probably instantly regretted doing so!
She got the full story, only she just let me get it out and listened (nicely) and calmed me enough just by being there. (Thank you!!)
Beyond that point I was a wreck. I may aswell have moved in to the hospital, I had to (I say had to, I’d pretty much insisted on it, just so that I felt ‘safe’ enough to be discharged as an inpatient!) go to the AnteNatal Day Unit 3 times a week to lay for an hour on the monitor, I had scans booked every 2 weeks from 28 weeks anyways, and I was at the gestational diabetes clinic/ obstetric clinic every week. Still my mental health declining wasn’t pulled up, and belive me, I asked for help, a lot.
At that time my diagnosis from the Community Mental Health “Recovery” Team that was on my notes was “Emotionally Unstable Personality Disorder.” You may know it as Borderline Personality Disorder. And I believe that this impacted the way I was reacting to situations that were occurring during the pregnancy (especially Kylie, but we’ll come back to her later!) I was still seeing my Community Support Nurse, but as I do when I get low I pushed people away, and to be honest, she wasn’t really that helpful and would um and ah a lot (Mr B can attest to this, it’s not just my perception!)
At 34 weeks pregnant I begged for an induction date from Dr A. As I was a VBAC attempt she was happy to book me in for an induction so that they could keep an eye on labour and control it should they need to (knowing about baby’s potential heart ‘thing’ which I still wasn’t that clear on, aside from they said that baby may need to go to NICU, and that they would do a heart scan once baby was earthside)
My induction was booked for 1st December. I would be 36 weeks and 5 days pregnant. The most pregnant I had ever ever been. I walked out of that appointment for the first time with relief, they *did* care about how mum was doing!
(I’m feeling the need to apologise for my lack of flow, I hope I’m making sense, this is the first time I’ve ever really ‘talked’ about how I was during MJ’s pregnancy, and even now, words can’t really express how rapidly my mental health declined when I was pregnant with MJ… or I’m scared to put it in to words because it’s still so taboo)
The next two weeks were a blur, everyone was getting excited about the new baby coming soon. Except me. I was focussed on getting through the next hour without thoughts of suicide or self harm. I focussed on the things I could control, organising when Little H would be going to my parents house, and what he’d need, clothes. And washing and re-washing the tiny baby clothes, but being angry at myself for getting my hopes up that this baby would get to wear clothes, and not be in an incubator. I cleaned the walls, and floors and washed clothes, or anything I could get my hands on. Anything that would stop me from thinking about what was in my head. The world was getting so loud, so imposing, but I felt completely alone and isolated. I was scared to talk about me, because they might push back my induction date, or take my baby away from me for being crazy.
So I bumbled through, trying to not sound neurotic when I went for sessions on the monitor and they didn’t let me do a full hour. Although that mostly failed. I wish I was brave enough to go back to the Antenatal Day Unit and apologise (or ask why no one called the on-call psych team person!?)
Finally, it was the morning of December 1st 2011. I had to ring the labour ward at 9am, I think I managed to leave it until the clock on my phone said 9:03am, but then “what if someone else rings before you and you can’t have your baby today!” is in my head. Engaged. Redial.
“Can you ring back at 10am, we’re a bit busy at the moment.”
The polite voice that comes out of me says “Of course, no worries!” (why do I *always* say ‘no worries’? It’s a lie!)
I hang up and cry. Stupid fear takes over. I try to remember all of the hypnobirthing stuff I read. I mostly focussed on the keeping fear out of the delivery room bit, because I knew that fear was all over me. Breathe.
I played Pinball FX on the Xbox and tried to not look at the clock. Sat, with my hospital bag next to me for the whole hour, occassionally touching it to make sure it’s still there. Mr B just stayed out of my way, I was delicate, breathe too loudly and I might break.
10am “You’re okay to make your way down now”.
No parking spaces. OMG, that caused tears. Mr B told me to get out and have a slow walk and he’d catch me up.
I just wanted to hide, but I stood in a hospital corridor and the lady who’d tried to get me on a progesterone trial for mum’s who’d had prem babies in the past appeared and talked to me. Polite voice comes out. My head was screaming “WILL EVERYONE JUST LEAVE ME ALONE!!” I finish talking to her and someone else who’s looked after me during the pregnancy comes and talks to me. After that I turn and face the window, look at a cement courtyard, breathe, don’t cry.
Mr B appears and we go upstairs to the labour ward. (on reflection I know I wasn’t great mentally because I missed my one oppertunity to “check-in” at the labour ward on facebook!)
Buzzed in and am being shown to my room and there’s the travel incubator parked up outside. When Dr. A appears to break my waters she starts with “Can you remind me why we’re inducing at 34 weeks?”
It confused me totally, I think I actually tilted my head at looked at her totally dumbfounded, and asked her to repeat the question!
My waters were broken at around 11am. As I was a gestational diabetic someone was meant to be coming to hook me up to glucose and insulin at the same time as the induction IV thing. In the meantime I was to prick my finger every hour to check my blood sugar level, and I wasn’t to get out of bed. Great.
There was a shift change around 2/3pm and I was told that sometime after the change the IV induction drugs would be started, and I asked if I could maybe get out of the bed and go for a wee. I wasn’t meant to but the midwife said if you’re quick. It was the best bit of the day, standing up and totally not thinking that dispite my waters being broken hours before that there would be quite so much left. “My socks!!” and I laughed (2nd mistake!) I waddled to the toilet, I didn’t need a wee, I just wanted gravity to try and help, even if it was such a minimal time.
At around 4pm someone tried to come and get a canula in, they then went and got Dr A before she went home, who looked at the veins in my hand and declared that she could get in there….. She couldn’t. No one actually seemed to care that my blood sugars were low, and that I hadn’t had lunch, I’d even brought sandwiches with me, but I was advised not to eat at lunchtime because they’d be starting the induction drug soon…. I think a total of 4 people tried to have a go at my veins, I’d told them that the crook of my right arm was the best place, but they were determined they didn’t want to use there.
I ended up with a canula in each wrist (because I needed 3 access thingies) and the drugs were started.
From that point on I was 1-to-1 midwife care, with the poor midwife having to sit and listen to me talk, just about anything. I doubt I even made sense. Then we had to stop the induction drug because MJ’s heartrate was decelerating with each contraction (more than usual) we started up again at around 11pm once his heartrate settled down and they were sure he wasn’t in distress. At 4am they did a check to see how far dilated I was, by that point I’d already told the night midwife my 23457436 birth plans for all eventualities, and said “if you tell me I’m less than 4cm I’m going to cry” and laughed. I was maybe 1.5cm, 2 at a push.
She told me that she was going to get the on call, but she’d get me the sterile syringes I’d asked for so that I could express colostrum so that Mr B could do the first feed, because I was general anestetic only (I’d had consultant appointments and signed 456784 forms to say that it was my wish to not try a spinal) they pretty much looked at the charts on the computer, combined with the fact that I wasn’t dilating, which meant they couldn’t do the thing to check if baby was in distress and hit a button and I was off to theatre, expressing colostrum, and trying to remove my bra whilst hooked up to drips on both arms, apologising to the staff for being difficult.
As soon as they took my hot water bottle away from my back and transferred me onto the operating table and strapped my arms down, everything hurt. The contractions that had been managable were horrendous, the fear took hold. Two midwives were trying to find baby’s heartbeat on the monitor, I couldn’t shut out the fear, so I talked to the midwife who was explaining why they were strapping me down, when the on call anesthatist appeared really close to my face and said “if you weren’t a code amber, I’d have a go at getting in your spine, I think I could do it!” my response was “what’s a code amber?” because I couldn’t even deal with the rest of what he’d said!!
Garlic taste in mouth, everything fades out. Tears are falling.
“What did we have?” were the first words out of my mouth, before I’d even managed to properly open my eyes.
“A boy, and he looks just like your dad!” I manage to just about see Mr B having skin to skin with this little baby who looked kind of like a chicken but with dark hair.
“I think he looks like an MJ” And I closed my eyes again.
When I came around a bit more, I cried because my baby was there, he was alive, and not in an incubator, I would get to hold my baby and not just apologise through plastic walls! I wanted to hold him, but I was shaking so badly Mr B actually took a step back when I held my arms out to take my baby, the midwife was more tactful and suggested that I waited until the anestetic wore off a bit more. I passed out again and woke up covered in blankets, but I wasn’t shaking, and I got to do a feed.
From that point on MJ was barely off of me, I did kangaroo care as much as possible, but when he was put in his little cot next to my hospital bed (usually because someone suggested mum put him down) he had his purple Cuski in there with him, that I’d been sleeping with in the week before his birth so that it smelt like mama, there were no other things in there with him, just a Cuski. And I had to have him as close to where my head was as possible so that I could sleep with my hand holding the rail on the cot.
He’s only a few hours old when ‘Kylie’ comes on shift and tells me to remove “that thing” from his cot because it might suffocate him. I look at her and just do it, but put it back when she goes away…. all the while looking at 2 of the babies in the 6 people ward who’ve got giant teddy bears stuffed in their cots and ‘Kylie’ says nothing to them.
The next day is Saturday, I’ve managed to get up and out of bed, and have a shower after having to beg for the canulas to be removed from my wrists as they’re painful (and not in use!!) It was the quickest shower in the world, because I had to leave my baby outside with the midwives/desk staff. I hated it.
Then I started seeing things, just little things, bugs, well, cockroaches, all over the curtains. I knew they weren’t real. Mostly because I was sure if anyone else could see them there’d be screaming and stuff. I mentioned it to ‘Kylie’ and I was told to stop being an attention seeker. I tried to tell someone from the night staff, but was dismissed and she talked a lot about making sure I was maintaining fluid intake so that I wee’d properly.
X-Factor was on, semi finals or something, 3 of the 5 of us in the little ward were watching it on the bedside TV things, but not through their headphones, all 3 of them had it through the speakers. On top of the cockroaches and how noisy my head already was, I thought I was going to go crazy and flip out. I mentioned it to a midwife, that I couldn’t sleep because of the X Factor in surround sound. She asked the ladies to plug their headsets in, but was met with hormonal women who wanted to watch the XFactor with their husbands and children around their beds, and there’s only 1 headphones plug thing…. It was only when partners had to go home (10pm) that they’d then plug the headphones in.
I kept my curtains closed because I couldn’t take any of it.
I felt so scared and vulnerable, and convinced that any number of people were going to try and take my baby away from me, so I did as much as I could with him asleep on me.
On the Sunday it was 10am before Mr B was allowed on the ward, by which point I was so wound up by the whole XFactor thing and fear that someone was going to take my baby away that I’m pretty sure I just went nuts at him for casually strolling in at 10.30am when *I* needed him to look after MJ so I could have a shower and try and get someone to let me go home, because no one was believing me when I told them that I could see bugs everywhere, and I was convinced that ‘Kylie’ was telling everyone about my breakdown earlier in the pregnancy and that she was telling everyone I was attention seeking (I still think that I heard her do that, I know that I read negative bits in my notes, but I’m not sure how much of it was the psychosis) and that no one was helping me, I just needed to go home.
I had to sign a number of forms to say that I was discharging myself, I did it politely without mentioning how let down I felt by the post natal care I recieved. One of Mum’s close friends came to see MJ and I at visiting time, at which point I was packing bags in a rage and chunnering about needing to escape and not trusting the staff, and the cockroaches. I’m not even sure if I let her have much of a cuddle, because I just couldn’t bare anyone who wasn’t me to hold him.
Monday morning I rang the Community Mental Health Team and asked for a Rapid Access appointment with a consultant.
I was lucky, I knew that I could do that.
I held off of anti-psychotic meds for a while, because I really wanted to breastfeed, but when MJ was 8 weeks old I decided that my mental health needed to be better just so that I could be a mum, and I got him to *almost* 9.5lbs all on my own (he was 5lb12.5oz at birth)
3 years I’ve been ‘managing’ my psychoses.
This year has been the hardest since MJ was born. I’ve been hiding away in my own little paranoid world, scared to let people see this side of me, scared to see people because the nice polite voice doesn’t always come out, and my anger and distain at situations can be seen all over my face.
Four weeks ago I self presented at A&E and asked to speak to the on-call psych person. It’s been a long time since I’ve done anything that ‘dramatic’ to ask for help, purely because my diagnosis of Borderline Personality Disorder, comes with a myth of being attention seeking.
I really needed help. I still do.
I’m taking every day, hour, minute at a time, but sometimes the seconds are too loud, and the minutes are too hateful, and the hours make me want to run away. Days are inconcieveable.
The “Home Treatment Team” have spent the last 4 weeks checking in on me every other day, make sure I’m still going, seeing how I’m doing, giving me someone to offload my mental shit on. Every other day they tell me “you’re doing good.”
I’ve been up at the Psychiatric Hospital a few times over those 4 weeks, having appointments with a Psychiatric Doctor, who I always want to call Doctor Cullen, it’s not his name, and he looks nothing like how I pictured Carlisle Cullen when I read Twilight, but yes, Doctor Cullen, the first appointment I had right after I sat down, he explained that he’d read my notes and that his instinct at that point was Bi-Polar Disorder, but he wanted to talk to me a bit more and get some facts and we’d go from there.
In the past, when I was given the Emotionally Unstable Personality Disorder diagnosis I contested it, with the doctor at the time, and with the Community Support Nurse, there was a bit of a battle, which ultimately led to the CSN telling me I was leading myself down a dead end not believing the diagnosis and I lost contact with the “Recovery” team.
My last appointment with Doctor Cullen he said that he’d updated my notes to show “Working Diagnosis : Bi-Polar Disorder”
You’d think that I’d be scared of that label, I’m not.
I’ve lived most of my life dealing with the highs and lows that I have had, I’ve been on nearly every kind of anti depressant, and we did the anti psychotic after MJ was born (still take that!) to finally have a working diagnosis and a chance to possibly try a mood stabiliser gives me immense relief!
It was only last week when someone from the Home Treatment (crisis) Team came to see me, and I talked about how anxious I was about MJ’s birthday and how I couldn’t stop thinking about how rapidly my mental health declined when I was pregnant and that I feel like the Emotionally Unstable Disorder diagnosis actually prevented someone from believing what I was saying at the time because they thought I was just attention seeking. She said that I was right to ask for help this time, and mentioned that the rapidly declining mental health in MJ’s pregnancy made her feel like the bi polar working diagnosis was possibly right.
She then went on to reassure me that bi-polar when treated and managed effectively meant that I could start living my life again, not hiding away when I’m low/high as a way to control my destructive blast radius.
Reading the story of the poor Bristol mama and seeing “It’s believed she had schizophrenia” made my blood boil, because I can imagine the hate campaigns that are going on out there right now.
I don’t know the poor mama, but chances are she had undiagnosed bi-polar disorder, which lead to puerperal psychosis once baby was born. Unfortunately her ending was different to mine. And I’d like to think that it will lead to changes in post natal care in those first few days, but the midwives and labour wards are stretched enough as it is. I just wish she’d have known where to turn, or had someone to say to her “you’re doing good.”