Haley - PANDAS Foundation UK

Postnatal Psychosis affects between 1-3 of every one thousand new mothers. This mood disorder affects new mothers indiscriminately. In some cases, the woman that develops postnatal psychosis has no history of depression or other mood disorders. In other cases, a woman may have a latent condition that surfaces as she experiences the hormonal intensity of the postpartum months.

Postnatal Psychosis is a devastating mood disorder that can develop two to four weeks postpartum or immediately after a woman gives birth. Postnatal psychosis causes paranoia, hallucinations (hearing voices urging a new mother to kill herself or her child), severe insomnia, loss of appetite, anxiety and depression. A woman suffering from postnatal psychosis often suffers alone because of the shame associated with this illness.

A woman experiencing postnatal psychosis may be in danger of taking her own life or that of her child. This condition is considered a psychiatric emergency and demands an aggressive response, including immediate hospitalisation. A woman in the throes of postnatal psychosis may not realize how ill she is. She needs her family and friends to be proactive and help her get the treatment she needs.

The photo above is of me, my partner and our gorgeous daughter LexiRose. Despite it being 4am, we look like any other happy family with our beautiful, precious newborn. However, we weren’t a normal, happy family. What the photo doesn’t quite capture is the torture and turmoil behind my eyes. Lexi was 3 weeks old and I was beginning to develop postnatal psychosis – the most severe form of postnatal depression.

I had always looked forward to having children and especially wanted a little girl, so when I found out we indeed were having a girl I was over the moon. My pregnancy was quite tough. I had hypermesis (severe morning sickness) pretty much the whole pregnancy and was put onto a cocktail of anti sickness drugs in order to combat that. I also regrettably had to leave my job due to not being able to teach a whole lesson without having to leave throughout to be sick or pass out. I felt absolutely no fetal movement so from 24 weeks I was having to go to hospital for almost daily monitoring to make sure everything was ok and so as I sank into antenatal depression I withdrew from everyone and everything around me and I therefore lost a lot of friends who were struggling to understand exactly what I was going through.

At 2 weeks past my due date I went to the hospital to be induced. I had told no one! I was utterly convinced something was going to go wrong and so didn’t want anyone to know. I had spent the weeks building up to Lexi’s birth researching stillbirth as due to the lack of fatal movements I was convinced she would not survive. I hated buying things for her as I felt embarrassed knowing I would have to then return them and explain that Lexi didn’t survive.They tried to induce me with the pessary tablet but it didn’t work. I had an allergic reaction to it and my throat began to close up as I found it harder and harder to breath. Doctors rushed in and did an EEG, decided to remove the pessary and said they would come back in 2 hours with a new plan. In that time I went into labour naturally and that was the beginning of my 30 hour labour. If I am being honest labour wasn’t as bad as I had imagined. I think as I naturally think of the worst it helped to make it bearable. I refused pain relief and was determined to get Lexi out myself. This didn’t happen. After 2 hours of trying to push Lexi still wasn’t coming out. The cord was wrapped around her neck 3 times, she was back to back with her arm hooked above her head and was moving up with every push not down. Due to my own hydrocephalus I wasn’t allowed a prolonged pushing stage and so regrettably the decision was made for an emergency c-section. My own hydrocephalus also meant I was unable to have an epidural or a spinal and so I had to go under general anesthetic. This was very hard as it meant Jon couldn’t be with me in theatre and also meant I wouldn’t be awake for us to see Lexi born.

Lexi was born at 14.30 on 23rd June weighing 9lb 10oz. I didn’t know any of this information until days later and even then I would frequently forget it, which makes me feel terrible. I mean who doesn’t know details of their child’s birth? I woke up from the anesthetic about 3 hours later and a freshly washed and dressed Lexi was placed in my arms. I looked down in my haze and thought “Is that it” I felt absolutely nothing at all. I knew this was wrong and I tried desperately to try to feel a bond over the next few days and weeks but it just wasn’t happening. I knew she was a beautiful baby and she was very well look after however it just felt as though she wasn’t mine, it felt as though I was just looking after her and her real parents would come to get her soon and as though i was going through the motions like a machine. A machine with absolutely no feelings.

Haley

I first noticed something was wrong whilst I was still in the hospital. I was crying uncontrollably all the time, my chest felt like it was going to explode, I couldn’t breath, I was having panic attacks, I was hearing things that I couldn’t explain. This was very unlike me but the midwives just dismissed it as ‘baby blues’ and said it would go away by day 5. Day 5 came and went and I was in no way better, in fact I was worse. I couldn’t bear to be near Lexi, I would scream at Jon to phone the midwives and tell them they had made a mistake and that I couldn’t do it, that I need them to come and get Lexi and then someone needed to come fix me because I was broken. I would phone my midwife and then later my health visitor daily screaming and hyperventilating saying someone needed to come and help me. No one listened. They all said it was totally normal and that it would eventually get better but  knew this wasn’t normal and I just needed someone to help me, I was desperate. 

I never slept! Everyone said to me that was normal when you have just had a baby and not to worry but it wasn’t that I was up with Lexi. She slept. I would stay up frantically cleaning the house, painting my nails over and over, writing stories, talking to imaginary people, internet shopping, anything to distract myself from the noise that was inside my head and the voices that swirled round the room. One night that particularly sticks in my mind was a warm summers night where I was unable to distract myself. I had tried everything and it wasn’t working. The urges were becoming stronger as I found it harder and harder to fight the voices. i didn’t know what to do. I felt the only way to make them stop was to run away. I opened my front door and began to walk. I had no shoes on and was dressed in pajamas. I had no idea where I was going. I made it about half a mile down the road when I realized I wasn’t going to get very far on foot and so I returned home to a wide open door, picked up my car keys and just drove. After about an hour I came to and wondered what on earth I was doing and where I was. I was so confused. I called the crisis team and just absolutely howled down the phone to them. They listened for a long time and eventually persuaded me to return home. I managed to get home and into bed. I woke up the next morning thinking I had dreamt it and then I caught glimpse of my muddy feet and my car keys on the bedside table. 

When Lexi was 6 weeks old my health visitor started to realize that this was something she couldn’t quite cope with as I was calling her on an almost daily basis and it was getting too severe and so referred me to the community mental health team. Since Lexis birth I had begun to write everything down, mine and lexis medication, lexis feed, poo and wee times, my thoughts, the voices I was hearing, everything. I showed this to the community psychiatric nurse who visited and she tried to reassure me everything was ok and it was normal for new mums to feel look this. Why was no one listening to me? She said she would come back in a week and to call in the meantime if necessary.

That evening I began to lose every thread of logical thought I ever had. I felt I was being told to hurt myself,to hurt others, to hurt Lexi, to run away, to destroy everything. I was very frightened. These thoughts and voices were to remain with me for months. Jon came home to find me sat under the dining table rocking and  screaming that I needed to be fixed. Jon talked to my community psychiatric nurse who decided I needed to be seen urgently and sent me to A&E. There a mental health nurse from the crisis team met with us, spoke to me and read my ramblings in my diary. She said she thought that I really needed to be in hospital but I said I really didn’t want this. I just wanted to be at home with Jon and Lexi and I wanted someone to fix me. Why couldn’t anyone just come and fix me? So she arranged for the crisis team to come out once a day for 2 weeks and to see if I made an improvement and if not she said I would then have to go into hospital.

2 weeks past and although the daily community psychiatric nurse visits made me slightly at ease I wasn’t showing any signs of recovery. I was just slipping further and further into the psychosis. I began to hallucinate and hear things that weren’t real, I would hear voices that would tell me to do things to myself and others and I had to constantly battle with them, I would believe things had happened that weren’t real. I became very suspicious. I thought everyone was watching me and so I drew all my blinds and curtains so no one could see me. I couldn’t make eye contact with people and felt that everything was bugged to listen to me – phones, tvs, computers, fridges, kettles, my car; you name it , i was convinced it was being used to spy on me. So the day came where I was told I would be admitted into hospital.

I suddenly became really excited and felt as though I was packing for a holiday. I was taking great joy in picking out outfits for me and Lexi and was looking forward to showing off her toys and pram. Then as we got into the car i was terrified and froze. I was unable to move or speak. This rapid swinging of moods was to become very familiar over the next few months. I would either be completely high, very excited, talking excessively, spending money like water and generally feeling untouchable or I would sink lower than low, frozen and scared, unable to talk or look anyone in the eye, terrified of the voices, telling me to do awful things and unable to make them stop.

It took me around 2 weeks to begin to talk to the staff at the mother and baby unit. I didn’t trust them. They were spies. I wouldn’t leave my room. Eventually as the medication began to take an effect though I calmed down and opened up. The mother and baby unit, truly change my life. It didn’t feel like a psychiatric hospital but felt like a home from home. They encouraged you to care for yourself and your baby but were always there 24hours a day to lend support. As I began to open up I began to attend occupational therapy sessions at the day hospital whilst the nurses on Rainbow cared for Lexi. I found art therapy most beneficial and in particular clay work. I would make models of how I was feeling or how I would like to feel in the future. I found this a much easier way of expressing myself than talking. It wasn’t all plain sailing in there though and there were times when I felt completely suicidal, overtaken by the voices I could hear and feeling there was no other way to make them stop. I JUST WANTED THEM TO STOP! I began to self harm as a way of blocking out the voices and gaining some control over what they were telling me to do. I  cut, burnt and pinched myself, pulled my own hair out, bashed my head against walls and floors, threw things, tried to hang myself from a shower rail, tried to drown myself in the bath, anything to make the voices stop. Gradually though I began to show improvements in my psychotic stages and my mood and so was allowed on day and then overnight leave. This gradually built up until I was home for a whole week only returning for occupational therapy in the day. 

I was discharged after spending 10 weeks in the mother and baby unit and I came out as a completely new person. I wasn’t fixed but I felt that I was definitely on my way. 

However, this wasn’t to last. 5 days after I was discharged the voices returned louder than ever, saying terrible stuff and telling me to do awful things. I wasn’t able to fight them off. I took an large overdose of sleeping tablets, anti depressants, anti psychotics and pain relief, basically anything I could get my hands on. It wasn’t what I wanted but I was unable to fight with the voices anymore.  They were so very loud. They were controlling me! Jon returned home and immediately phoned an ambulance. What happened next is very hazy but I ended up in the lakes, a psychiatric hospital for a further 2 weeks. There the doctor changed my medication and it was almost instant as i returned to normal, my old self, the sparkle was back and the voices were gone. I am not going to say i am 100% al the time, because no one ever is but the change that medication made was truly amazing.

Today, I feel amazing. I am so proud of my beautiful baby girl and feel awful that the first few months of her life were blackened by the dark times I was going through. I can’t thank my partner enough for everything he did to help and support me and Lexi through this time. He truly has been my rock and my one in a million. I couldn’t ask for a better partner and daddy. I am feeling completely positive, the voices have gone and I feel like my old self again. I am returning to university in September to retrain as a mental health nurse, inspired by what I have been though and I can’t wait to help other people who like me have become affected and often crippled by mental illness.

If postnatal psychosis and postnatal depression were not so taboo and not such a ‘shhhh, don’t scare the pregnant woman’ issue, and out in the open for all to be aware of, every 1/1000 mothers would have a better chance of receiving the proper treatment right away, rather than the scenario where no one knows what on earth is happening because no one has ever heard of postpartum psychosis or any of the symptoms she is developing, and her mind has gone to a place where no one can reach her.

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