Where have you gone?

It started with a mighty fry-up.

Bacon, eggs, mushrooms, sausages, baked beans, toast. Hearty platefuls,  one for me, one for my husband. My newborn in one arm, frying pan in the other.  This having a baby lark is a piece of cake, invincible me, I can do it all.

“We need to eat a big breakfast, big breakfasts are important, especially  now I am breast feeding!”

Talking again, fast, unstoppable. I hadn’t slept for three nights since coming home from the  birth unit. A whirl of excited competence. We just thought it was the famous love hormone Oxytocin, which serenades all new mums. Endless phone-calls, emails, texts to friends and family.  Euphoric. “It’s amazing, I love it, I’ve never been so happy, oh you should see my baby, she is gorgeous, such a good baby. I even love breast feeding, it’s going so well.” Loud, fast, nonstop.

As we tucked in, a hot, overwhelming rush hit me, sinking, dizzy.  I needed to lie down.  I abandoned the fry up, handed our baby to my husband and headed upstairs, black dots in front of my eyes and  lay down on my bed. Thump, thump, thump, heart racing, within seconds, gasping for breath, clutching at my chest, choking. I yelled to my husband, up the stairs two at a time.

“I can’t breathe, I think I’m dying, quick call an ambulance.”  My chest was tightening, heart crashing, convinced this was the end. “Take good care of our baby, tell her I loved her, you’re going to be just fine on your own, you’ll be such a good Dad, I’m so sorry we can’t do it together.”

The ambulance took half an hour; that’s a long time when you think you are dying. They checked me, reassured us, a textbook panic attack. They said my husband should take me back to see a doctor and that birth could be very traumatic for the body.

It was February 2005, a few days after the birth of our beautiful girl, our first baby.

The next 24 hours were dark. Enveloped in paranoid thoughts, plagued by the panic attack consuming me again. The mania had gone, replaced by extreme anxiety, the tight chest persisted.  I felt scared to try anything, go anywhere. Irrational thoughts, fearful of the knives in the kitchen; maybe they were a danger to me. Delusional imaginings. I was convinced I would become a famous author that lived in Hampstead, that I had great wisdom to share with the world. Words leapt out, symbolic; crossword clues, newspaper headlines with hidden meanings. Insomnia. Rushes of anxiety coming in waves, rising up, overwhelming me, fading away. I called out, befriending them “Here you are again, I know you, you can’t harm me.”

I knew I was deeply unwell. I was losing my mind.

My husband took me back to the birth unit and they called a psychiatrist. Questions. Then, “Anna, you have a rare postnatal illness known as Postpartum Psychosis, we need to take you in to a psychiatric hospital and medicate you, watch you for a few weeks, in case you try to harm yourself or your baby.”

The words smashed, shattered, suffocated me in fear. Disbelief. Me? No previous mental illness. No familial history of mental illness. How? Why? It made no sense.

The pregnancy had been a breeze. The birth itself was reasonably normal, overdue at 41 weeks; they decided I should be induced. I had an epidural and our baby girl arrived after a normal delivery.

Thirty years old. One of the happiest, most positive people I knew. Good job, strong marriage, sporty, fun, sociable, balanced, loving family.

Bang.

Postpartum what? Psychosis? How on earth has this happened to me?

The power of autosuggestion is extraordinary; when someone tells you “you are psychotic” the fine line between sanity and insanity is washed away, leaving behind a pool of doubt for every thought to flounder around in. I didn’t trust my own mind anymore.

I was terrified.

Unlike Postnatal Depression, Postpartum Psychosis is deemed a psychiatric emergency requiring urgent treatment. I was taken in to a private psychiatric hospital in central London. My home, my prison for the next two months. A Mother and Baby Unit would have been preferable but we didn’t know they existed. My baby could only be with me during the day but had to return home with my husband at night.

The lavender scented  bath was a nightly ritual, ‘good to calm the nerves’ they told me. I was an obedient patient. I was going through the motions of yet another doped up, numb night with a broken heart and head. My husband and Mum had just left with my smiley, sleepy, peaceful angel, now a few weeks old. That was the hardest time, the hour after they left the hospital, alone again, in my soulless, white room, every pulse of maternal love aching to hold my baby, be with her, feed her, love her, be normal again.

I was mad. A mental patient. Really? This wasn’t meant to happen.

I pulled my hair back in to a ponytail and stepped towards the bath. I caught my reflection in the small, square, institutional mirror above the sink. I came closer and looked harder. Skin sallow, eyes distant, afraid and empty. I heard myself whisper,

“Where have you gone?”

I whispered again “Will you ever come back?” No answer.

Quiet, frightened tears welled and brimmed and fell in to the sink below.

How about our little baby? Women who’ve suffered Postpartum Psychosis will often talk of a broken bond.

I wonder to this day if she knew something was wrong. She slept and slept and smiled and slept. Undemanding, content, asking nothing of me other than the cuddles and feeds and the nappy changes I could muster. Of course there was no more breast-­feeding,  I was so disappointed, it had been going so well. A big chunk of my heartbreak came from being on medication and not being able to feed my baby in the way I’d imagined.

The emotional pain aside, my most often repeated line about my experience with Postpartum Psychosis is that I was one of the lucky ones. I was diagnosed and treated quickly and I had a phenomenal husband, wonderful parents and close friends beside me. My amazing Mum moved to London and alongside my husband (who had to return to work in time) looked after our baby with me. My mum and baby came to see me every single day in hospital, we would go for long walks and I would do all I could manage for her.  My husband came every evening. Thankfully, with this daily connection, she and I never once lost our bond. Had I been in a mother and baby unit, with perinatal expertise, the heartbreaking separation at night, could have been avoided.

The stint in the psychiatric hospital under a generalist psychiatrist lasted a couple of months and my drug treatment seemed to have limited success. My medication took a long time to get right. I was allergic to the first combination and didn’t seem to respond to the second. After about two months the psychiatrist recommended a course of intensive ECT (Electro Convulsive Therapy).

This felt very dramatic and was an incredibly hard choice for my husband and my parents to have to make on my behalf. Having spoken to another psychiatrist, a friend of the family, they took the decision to give it a go. I had no capacity to object or even fathom what would help me. Zombie-like, semi-mute,  I had an intensive course of treatments over a two-week period. Each treatment meant a general anesthetic. This was an awful time, etching a deep mental scar.

I stood outside myself looking in, detached but present.  I watched myself being wheeled in. The room and everything in it dauntingly white, overly cheerful faces of the clinical team greeting me, trying to reassure me as I lay powerless, helpless, tense, terrified, exhausted. Here I go again and then the anaesthetic and then nothing, until I woke, then tears. I’ve never known vulnerability like it, before or since.

It’s not always helpful to second-guess what you cannot change. Looking back I’m not convinced a perinatal psychiatrist would have made the same choice with the ECT. We had no way of knowing there was a better way and everyone did what they thought was best.

The long days dragged on, numb days, family and friends visited. My only reason for keeping hope was my angel baby, sleeping and smiling and sleeping.

Was this how it was going to be? Was I ever going to be my old self again?

I was allowed out for a small trip to Kent in late April and that changed everything.

I was to spend a few days at my parent’s cottage, fresh air, homemade food, restful and wrapped in love. Everyone was hopeful, an expectation that maybe this was it, maybe I was on the mend.

On the first morning away from the hospital, I awoke feeling anxious and vulnerable. Suffocating agoraphobia, deep fear of another panic attack. I came downstairs, shaking, tearful. Why won’t this leave me alone?

Mum called a local clinic, she knew they offered psychiatric help; they said they could see me right away. I was disappointed, terrified and so upset. Here we go again. Why can’t I get better?

We were greeted by a relaxed and peaceful man in his fifties, if he owned a word it would be reassuring.  I took a tentative seat and began to recount my story to this new psychiatrist. He nodded knowingly and within minutes, I heard the magic words, “Anna, you do know you will recover from this don’t you?”

No one had been able to say that until now. It changed everything. I broke down and sobbed.

This new psychiatrist was a perinatal specialist and had seen and treated countless cases of Postpartum Psychosis. He gently recommended I should be admitted for just a few days whilst he changed my medication. He insisted my baby was with me at all times unless I was sleeping. Within just one week, I had made a remarkable leap towards recovery. Already I could look in the mirror and see Anna again, me. There I was with a hopeful smile. The whisper again, “There you are, I know you.” I knew then I was coming back.

By May, with my four-month old girl in arms, I was enjoying my baby, surrounded by friends and family, functioning as myself again. Laughing, socialising, long walks, day trips, good food, and living life once more.

I saw this wonderful new perinatal psychiatrist weekly at first, then monthly, slowly, gradually, gently reducing my medication with each visit. He talked to me like an adult rather than a patient and reassured me with every doubt I had. I went from better to one hundred percent by the end of the year and made a full and complete recovery.

I was finally discharged a year later, almost to the day of the mighty fry up and catastrophic panic attack. As we said our final goodbye, “Anna, there will be a high risk of recurrence if you do decide to go on and have a second baby, but you know where to find me.”

Our son, was born on the 13^th May 2008, three years later.

As with our daughter, my due date came and went and this time we let nature take it’s course, no drugs, no intervention, a calm, relaxed, natural birth at 42 weeks. Great debate came before the decision to have a second child and we were all worried. I spent a long time preparing, especially mentally. Acceptance, I decided, was the only way to approach it. I’d learnt vulnerability the hard way. I accepted that it may happen again and that, whilst terrifying, it would be all right because I knew. I knew what Postpartum Psychosis was, where to go for help, how to deal with it and that it was all right, in time I would recover.

I was one of the lucky ones. Thankfully, there was no hint of psychosis second time around, no anxiety, no mania, no delusions, no insomnia. Nothing.

I was myself; I was there, free to enjoy a happy, peaceful and special time as a Mum.

To my girl, thank you my angel baby.

To my husband, thank you my rock.

To my Mum, thank you my hero.

So, why am I involved with APP? Well, my family has been through it and come out the other side, let me explain….

2004 our first child was born and everything seemed perfect, it was “the best of times”. The baby (a boy) was beautiful, healthy and happy. My wife also was beautiful, healthy and happy. For a week I was the happiest I had ever been, I was a dad, I had a beautiful family, I finally felt like a grown-up.

My wife was amazing, she had so much life and energy, and we were really enjoying parenthood and showing off our new son to friends and family……but….after about a week I began to notice that my wife’s behaviour was getting a bit…. unusual…she was still happy and energised but now it was as if she was too energised…the volume had been turned up to 11. She started coming up with bizarre schemes to make our fortune becoming obsessed with one particular idea. I discovered she had donated large sums of money to charity and was starting to arrange all our possessions by colour. She spoke about how colours appeared particularly vibrant, sounds were amplified and smells were overwhelming. Finally she began to have conversations with her dead father…obviously something was going very, very wrong.

The crisis came after I returned to work. My wife was due to attend a “Birth reflections” session at the hospital (where new mothers share their experiences of pregnancy and birth). The poor organisers didn’t know what had hit them! So concerned were they at my wife’s behaviour that they told her to go and see a Dr. this was precisely the right advice, given to precisely the wrong person. She took it very badly (seeing their advice as a direct challenge to her perceived view of the world). But, knowing we had private health insurance she presented herself at the local private hospital demanding to see a psychiatrist. That’s when I got the phone call and my life began to fall apart….

When I got to the hospital it was clear that my wife was in the middle of a severe psychotic episode. We saw the duty psychiatrist (who had no experience of post-natal mania) the experience was best described as “difficult”…well…my wife started throwing things at him. After 20 minutes we were packed off with some tablets (I never did discover what they were) and the telephone number of a crisis team should the need arise. We were to return to the hospital the following morning for a more detailed assessment…..we never made it.

At home that evening things went from bad to worse. I was desperately trying to get my wife to eat and to sleep (having been told that rest was “critical”). But, that was the worst thing I could have done. Trying to get someone to sleep whose brain is busily frying was impossible. What made it worse was that she saw me as an obstacle to her achieving what she wanted, in her eyes I was the one with the problem and I must be removed from the equation. I don’t what to go into exactly what happened; even now 9 years on the memories are very raw…

I tried phoning the crisis team….the number I’d been given was wrong. I tried and tried again, changing the last digit until finally I got through. Two women turned up 30 minutes later (by now it was 11:30 at night). My wife instantly went on the offensive, smashing jars and bottles to create a glass barrier between us and her so they couldn’t get to her. The decision was made that my wife needed immediate hospitalisation. Now we were faced with another problem. To get my wife to hospital required the authorisation of a psychiatrist, the duty psychiatrist that night was unavailable for several hours. We couldn’t wait that long. I was told the only other option would be the police; they had the power to detain under section 35 of the Mental Health Act. 20 minutes later a police van turned up with two burly coppers. I was then told that their power to detain only extended to public areas, they could not enter my house to detain my wife, even with my permission. My only option was to “persuade” my wife to leave the house. There was no way that was going to work so I had to physically pick her up and carry her outside where she was detained.

The police stuck her in the back of the van and then they and the crisis team drove off into the night leaving me, quite literally, holding the baby…he was 16 days old.

In the space of 48 hours I had gone from being the happiest, proudest dad in the world, to seeing the woman I’d spent 15 years with, the mother of my first-born destroyed by an illness I had no idea even existed….it really was “the worst of times”

What to do now….there I was, in the middle of the night, suffering from shock, holding a baby who would need feeding within the next 2 hours. Then I found out who my friends really are. At 1am I phoned my best mate who lived 30mins away, his wife was at my front door 45 minutes later. She was wonderful. She phoned the hospital and got a duty midwife to call with supplies of formula. She swept up the broken glass and shattered crockery and, most importantly made me a cup of tea.

The following morning I made my way to hospital…the secure psychiatric unit…a truly dreadful place, somewhere I never, in a million years, thought I would be seeing. My wife was sedated. I was told it was likely she would only be there for a day or two before transferring to a specialist Mother& Baby unit (MBU). 10 days later she was still there. I would visit twice a day with our baby (all visits were strictly supervised), this enabled my wife to feed the baby and attempt some sort of bonding.

Eventually after 10 days a bed became available at a specialist unit 35 miles away. We transferred on the 11th morning, my wife in a secure van and me following in the car with the baby. Little did I realise how familiar I was to become with the MBU over the coming months. Once she and the baby were settled the duty nurse sat me down and tried to explain what had happened to my wife. Finally there was someone with experience of this illness, which I was told was called Puerperal Psychosis. It was explained that after birth a hormone is released that gives a sense of euphoria. In the vast majority of cases this euphoria is very mild and the supply is quickly “shut-off”. In puerperal psychosis the opposite happens. Production goes into overdrive until eventually the brain “blows a fuse”. But, the most important 3 things the nurse said to me that day was:

1. Don’t worry
2. Your wife and your baby are safe
3. She will get better

It’s only subsequently when reading up about PP that I realised how important no.2 was. There are cases where, tragically, help did not come in time and the mother harmed herself and/or the baby.

So then began the slow process of treatment and “normalising”. I was expecting my wife to be in hospital for a week or so…how naive…..I was told she would most likely be an in-patient for 3-4 months….and full recovery would like take 12-18 months.

I started to struggle, physically and emotionally. At this time my work involved a 40 mile commute. Unfortunately it was 40 miles in the opposite direction to the hospital. I got into a routine of driving to work, doing a full day at the office and then driving the 70 miles to the hospital to get about 45 minutes with my wife and son and then drive the 35 miles home. After 10 days of this I was exhausted and needed a break. I wasn’t eating very well (lots of take-away’s and ready meals) and I must admit I had a drink or 3.

The worst thing I felt during the drive from work to the MBU was not knowing what I would find when I got there. Would my wife be lucid, “normal” or sedated? Even worse was arriving at the unit and going into the nursery and not recognising my son…I honestly didn’t know what he looked like…I had to recognise him by the teddy he had. This was the straw-that-broke-the-camels-back. I couldn’t take any more, I was in a very bad place….

After a couple of days, and thanks to my mate for providing a shoulder to cry on, I got myself together and was able to cope a little better. But, what this highlighted was the lack of support for partners of women suffering post-natal mental illness. My wife was safe; she was being cared for and treated. I was on my own, having to hold down a job, dealing with questions from friends asking about the baby and my wife…trying to be normal.

After 3 months we were told that my wife and child could come home and the next stage of our lives as a new family could begin. This turned out to be more challenging than anything that had happened in the previous months. There was the misconception that, as she is being discharged she must be better, surely. Nothing could be further from the truth. I was completely unprepared for her return. I was told that she needed rest and peace and quiet. I had to minimise all stimulus. All the “New Baby” cards were taken down, all the presents put away. My wife was totally unable to make a decision, a simple question like “would you like rice or potatoes for tea” would send her into a spiral of confusion and doubt that could take hours to recover from. I quickly learnt not to ask her again.

A few weeks ago I read “Touching Distance” by James Cracknell and Beverley Turner, they talk about James’ recovery from a traumatic brain injury (TBI) after he was knocked off his bike in the USA. So much of what Beverley said about the change in personality cause by the TBI resonated with how I felt about my wife in the months that followed her discharge from hospital. The incredibly bright, vivacious, funny & decisive woman I had fallen in love with at university was nowhere to be seen.

But, and it’s a very big but, there was light at the end of the tunnel. We had a truly brilliant Community Psychiatric Nurse. She visited every day and gradually over the next 6 months I could see the life returning to my wife’s eyes, her personality was coming back. We also were put in contact with a brilliant organisation called “Home Start”. They put us together with someone who would visit to offer practical help looking after the baby to give us a break. She was brilliant and has, in the years that followed, become a close personal friend and “honorary granny”.

So, after about 10 months we had reached a stage where my wife was probably 75% back to “normal”. The turning point was realising that she could laugh out loud without those around her worrying she was becoming manic. She was making decisions and generally feeling “in control”.

In 2007 we decided to have another baby. This was a pretty momentous decision as we were told there was a 50/50 chance of another episode. But we decided that, with the proper care plan in place, we would risk it. Our reasoning was that we knew the warning signs and could get help before things escalated. Our 2nd son was born in February 2008. The care plan swung into place immediately. We packed our eldest off to his grandparents for the week, my wife was given a private room at hospital where she would have complete rest. We had been told that if we reached 14 days without any symptoms then we would be OK. Needless to say, they were a pretty intense 2 weeks. We were also told to avoid all stimuli, so we had the bizarre situation of having a new baby, but not being able to celebrate. No cards, no presents, no visitors.

Day 14 was wonderful; we had made it and at last could begin the (muted) celebrations of a new baby. Now, 5 years later, we are good. My wife is the woman I met and fell in love with and is coping as well as any mother with two boys can.

I still find it difficult to talk about those months in 2004, writing this has not been easy, but it has been cathartic and is long overdue.

My pregnancy was planned for a long time, and sailed by in a buzz of baby shopping, scans and antenatal classes.  We were so excited to be having a baby boy and had even moved house in preparation.  We were settled. Sorted.

All this changed, less than 24 hours after our son was born.  We had a very long and difficult labour, followed by a petrifying emergency C-section.  My son was here, and safe, and for that I will be eternally grateful.  But little did I know how things were soon to unravel.  We were in the High Dependency Unit, a few hours after my husband was sent home in the middle of the night, when I had my first psychotic episode.

It's hard to describe "psychosis".  I have very vivid memories of some things, and absolutely no recollection of others.  In a medical sense on that first night I presented with catatonia.  The midwives on night duty could not rouse me, and I was unresponsive.  At first the doctors thought I'd had a massive stroke.  In my head, I had no idea who I was, where I was or what was happening to me.  I did not know whether I had had a baby, a husband, a family or if this was all some cruel nightmare.  I was convinced that I was about to die, that my heart was about to stop, my belly was going to explode.  In my head, I saw the midwives don surgical scrubs, in preparation for dealing with the body.  They drew the curtains because (I thought) they didn't want the other women on the ward to see me die. They were collected around my bed whispering about why I was not dead yet, and getting annoyed with me for taking so long.

Eventually, after some hours, I "came around".  I started to recognise my husband when he arrived, and later that day I was moved to a side room under the supervision of a psychiatric nurse.  While I struggled with sleeping, and breastfeeding, I was just desperate to get home.  My family wanted us home too, so we convinced the hospital team that my psychotic episode was a one-off event and that with a lot of family support we could manage better at home.

Sadly, we were proven wrong.  A few incredibly stressful days later, we ended up back in the A and E department of the hospital, begging to be seen by the same kindly psychiatrist who had seen me earlier in the week.  He swung into action and arranged a bed at our local(ish) Mother and Baby Unit.  I was technically a voluntary admission, but I felt this was my only chance.  I was primarily desperate to sleep, and to take the burden away from my husband and family.  I was also (psychotically) worried about the physical health of my son - I was not capable of looking after him (so I thought) and at least at the psychiatric hospital there would be doctors and nurses on site.  My son was whisked into the nursery that first night, where he was looked after by the staff.  And I was shown into my little bedroom, my belongings itemised, the lack of hooks or door handles or proper bedlinen oh so painfully evident.

Things had to get worse to get better.  Turns out I was still fighting a postnatal infection, and my psychosis was only just ramping up.  At various points during that first week, I again thought I was dying, that I was trapped on a gurney being driven to a crematorium (actuality: I was on a stretcher, in an ambulance), that I was somehow going to suffocate to death in my room.  I became fixated by panic buttons.  I was convinced all the staff were trying to trap me in some way, and so I refused to eat or sleep.  I had hit rock bottom.

But, it soon proved, psychiatry works!  I was treated with sedatives and antipsychotics. And rest - lots and lots of rest.  I didn't have to worry about my baby, but I did know he was there.  As I got better (after about ten days), I gradually started to do some of his care.  The MBU staff were incredibly patient with me, giving me the chance to do as much as I felt able to.   As the psychosis receded, it was replaced with sadness.  I struggled to come to terms with what had happened, and I felt so guilty at how I had failed my son and my husband.  Again, the MBU staff were great here - nurses took the time to sit with me in my room, no one batted an eye if I burst into tears in the middle of Strictly Come Dancing.  And I was encouraged to take part in group activities, or at the very least spend a little time in the communal areas rather than hiding in my room.

I can pinpoint the turning point in my recovery.  It was in the middle of a session with the unit's child psychologist (who helped mums and babies bond together, and kept an eye on the babies' development).  She had a gentle, calming air and she encouraged me to actually look into my son's eyes and smile and laugh with him.  Before that point I had never even seen him as a little person.  I had struggled anxiously with every nappy change, every bottle feed, every bath time.  But here we were, smiling at each other.  I cried some happy tears then - my baby was going to be ok! My family was going to be ok! I was going to be ok!

It took many more weeks of confidence-building in order to be well enough to be discharged home.  But we did get home, and life since then has gotten better and better. I learned how to mother and love my son and he has become the centre and light of my life.  Having gone through such an acute illness makes me grateful for what we have, and in some ways has given me added strength.  When the worst thing has already happened to you, and you have survived, what is there left to fear?

Two days after my son was born, when we arrived home after being discharged from hospital, I suddenly experienced a feeling of panic that I had never felt before. It is so hard to explain. I actually think I started to have misgivings about Joe's existence while in the hospital but the reality of how bad I felt didn't hit until I left the ward.

When we left hospital, as soon as I felt the outside air hit me, while strapping Joe into his car seat, I burst into tears. Uncontrollable tears. I couldn't stop crying. I was telling myself in my head to stop crying but I couldn't. It was as though I had no control over the tears. John asked if I wanted to sit next to Joe on the drive back to our flat. I shook my head and said no. I didn't want to be near him. We got back to our flat and as soon as we walked into our living room, I felt like I couldn't breathe. I felt a wave of indescribable panic come over me. I felt like I was being suffocated. I actually felt like I had a hand over my mouth and my mum said she noticed that I was pulling my lips. I was very scared of something.

We posed for a family photo with me, my partner and my son, Joe and my parents. In the picture, everyone looks so happy but I am in tears. I didn’t understand what was wrong. I had wanted my child so much and imagined I would be euphoric when he was born but what I felt was very, very different. My hands started tingling and my head started to pound. My head felt like it was going to explode as I had a sense of doom come over me. I suddenly felt I had made a terrible mistake in having Joe.

I felt like I couldn’t breathe. I felt a wave of indescribable panic come over me

He (the psychiatrist) said he could see I was desperate for help and the reason I wanted help was because I wanted to be happy with my son - which meant I loved him

The nurses said even though I felt like I was a rubbish mum, they had observed that I was very caring towards Joe and needed no support looking after him.

Recovery isn’t easy but I am well, and I can function