A story which highlights our need for a mother and baby unit in Wales. A Hidden Illness: My Postpartum Psychosis Story by Danielle Webber. UK Maternal Mental Health Matters Awareness Week 2019
On 1st April 2016, at 11.05am, I gave birth to a wonderful baby boy. When the midwife placed my baby onto my chest it was the most euphoric experience. I felt complete. I felt so much love for this little person. Being pregnant couldn’t have come at a better time. I was excited and ready to be a loving mother. I love children, their wisdom, their creativity, their energy.
As a profession, I worked with children who experience domestic violence; my partner is a youth worker. I’d read everything you can read about childbirth. What I was less aware of was what could happen following birth, how common it was for a mother to suffer mentally. My mental health began to deteriorate rapidly after my son was born. Luckily, I was quickly diagnosed with the rare and severe mental illness Postpartum Psychosis and Postnatal Depression.
1 in 1000 mothers suffer with Postpartum Psychosis and Depression in the UK. It is statistically the biggest killer in women following the birth of their child. The best way of treating this illness is to receive psychotherapy and medication but most importantly to be with baby to establish a loving bond.
Mother and Baby Mental Health Units enable mums to recover by allowing the baby to be with mum in hospital whilst she gets better. Mother and Baby units specialise in perinatal care. I do not exaggerate this when I say that the Mental Health Mother and Baby Unit I was admitted to saved my life.
Sadly, the unit was located in London, approx 200 miles away from my home in South Wales. There are no Mother and Baby unit’s in Wales. I believe this is a tragedy. My partner had to travel from Wales to London every weekend. Financially, we were unprepared for the costs of travel, especially as my Partner was made redundant the day the baby was born. I felt very far away from home and my family. There is only a handful of mother and baby units in the UK, so it is a postcode lottery that determines whether a woman receives the specialist care she needs.
I’d suffered with depression previously but had never been as ill as I was following child birth. This illness isn’t an easy one for people to hear, it is dark and dangerous and my opinion is that it is often swept under the carpet in society. Only a small amount of people are aware of Postpartum Psychosis. I know that I am one of the lucky ones as I was listened to and was able to receive the specialist care I needed. So many women do not have access to this support and never get heard.
For women without access to a mother and baby unit, the only alternative is for her to be admitted to a psychiatric ward away from her baby. I spent 4 days in a psychiatric ward in Wales before being transferred to London.
I hope my story provides insight into how devastating this illness is. I hope and pray that The Welsh Government listens to the voices of desperate, ordinary women who need specialist support. I will try my best to advocate for there to be a mother and baby unit in wales. This illness is indiscriminate; it could happen to any woman expecting a child. I was an ordinary person, who drew a short straw.
At two days old, my son and I were discharged from the maternity ward in the Royal Gwent Hospital. The night we brought our baby home, I noticed a rash on his back. I became manically frantic and upset. I called 999. I believed the baby had meningitis. I was wailing, ‘MY BABY, MY BABY!’ In my head, he was not responsive. When the paramedic came, she reassured me that it was just a heat rash. That night, the hallucinations began.
I decided to block them out, I thought they came about because of how utterly exhausted I was. I had not slept since the night before giving birth. The visions didn’t last long. They came in little flashes out of the corner of my eye, through the bars of my sleeping child’s crib. I saw images of him distorted, beaten up and dead. I didn’t tell anyone about them at first, I just thought it was my exhausted head playing tricks on me.
The next day we had our families arrive to see the baby. They say now that during the day I was speaking 100 miles per hour and I wanted to throw a party. I was laughing hysterically one minute and then crying hysterically the next. It is only now that I realise I was having a manic episode. I barely spent time with the baby. I didn’t eat or drink and had forgotten how to take care of myself. I hadn’t an idea of how to breastfeed and was struggling. My breasts started to become sore and engorged. My baby wasn’t feeding and was hungry.
My midwife Suzanne came to see me in my home and noticed that I was in need of help. She arranged for us to stay in the local birthing centre for a night or two in order for the midwives to help me breastfeed. It was in the birthing centre that the psychosis became worse.
The visions were becoming more frequent. I would look at my baby in the clear plastic hospital cot and see his face appearing angry, beaten up and dead. There were posters of babies on the wall in the room. Their faces appeared angry, and their eyes blackened. I was crying and laughing and talking so fast, I had no control over what I was saying. I couldn’t dress myself or look at myself. I felt like a failure because my breasts were in such poor condition. At one point, my partner had to cradle me to sleep as I frantically believed that if I went to sleep I would die. I was terrified, shaking, and crying. I started having thoughts that my partner and the baby would be better without me and that I couldn’t take care of him. I didn’t eat. I hadn’t ate more that few mouthfuls since the baby was born, this would go on for a further 2 weeks. I couldn’t sleep. I thought I would never sleep again.
‘This room looks like a pigsty!’ the nurse said. I started making sure all the cups on the tea tray were aligned, that all the towels were perfectly folded. I would fold and refold until they were right. It is only now that I realise that the nurse said no such thing.
I started to feel terrified. At one point I got dressed, put a full face of makeup on and I left a note to the midwives saying that I had given up. I went from being on cloud nine expecting the arrival of my first child, to writing a suicide letter a few days later. I truly believed that if the midwives let me leave that day, I wouldn’t be here.
My relationship with my newborn had started to change. I believed that the baby was talking to me though his eyes, telling me that he hated me. I felt completely disconnected from him. I would forget I even had a baby. I started to believe that he was a different baby from the one I gave birth to. My visions were worsening. I couldn’t retain information. I had forgotten how to write my name. It was so hard to concentrate on what people were saying. I asked for no visitors as I didn’t trust anyone.
Steve had noticed I wasn’t myself and had told the midwives. A woman came through the door of my room. She stated she was the mental health specialist midwife. I screamed and ran into the corner of the room and wet myself out of fear. I believed she was going to take my baby away from me. I could see the worry in my partners’ eyes and it broke my heart.
The midwives arranged for me to have an official mental health assessment with a psychiatrist. During the assessment, I was clinging on to a midwife’s hand. ‘I’m sorry,’ ‘I’m sorry,’ ‘I’m sorry,’ I would cry, as I admitted my feelings about the baby. The midwife was trying to ease me, but I had a vision of everything in the background behind her face going dark and I became very afraid. I was utterly terrified by what I was seeing and saying. I felt like 500 different people. My mind was racing. I believed I was dying.
I couldn’t stay in the birthing centre for legal reasons. Leaving the safety of the midwives there was hard. They had been so kind and nurturing with me. I was expressing milk for the baby at this point in order to allow for my breasts to heal. I had to go to a maternity ward at the Royal Gwent Hospital which is a half hour drive away from the birthing centre. For safety reasons, I had to go in an ambulance. The ride was scary. The staff were talking and I couldn’t understand them, it was like they were talking in gibberish.
During my time at this hospital, I had to be observed for 24 hours by a mental health nurse. I went to the window of my room that looked out onto the city landscape. I pushed the window open and noticed that it opened widely. That was when I had the horrendous thought of throwing the baby out of the window. I feel so sad and guilty writing that sentence. I am a peaceful, non violent person. I would never hurt anyone.
I became frantic. ‘I need to switch rooms!’ ‘I need to switch rooms!’ ‘Look at the window! Anything could happen!’ ‘You need to get that baby away from me!’ I knew my mind wasn’t my own and I didn’t trust myself around the baby. I believed everyone was watching me and that there were cameras. I believed I was being tested for something.
I asked for a pen and paper. Initially I was trying to jot down the times I needed to express my milk for the baby but it turned into a way of processing what was happening in my mind. I frantically wrote down what thought’s I was having. I was terrified of how impulsive I was getting that I believed I was dangerous. I believed that there was potential to harm myself or possibly my child. I asked the baby to be taken away to another room as I didn’t trust myself. Deep down there was a part of me screaming to come out, the old me. I had thoughts of jumping off the transporter bridge I could see from the window. I felt utterly trapped in my mind. I felt as if my mind had been invaded by a foul dark creature. I saw a shadow moving under my bed. My partner kindly looked underneath the bed for me and reassured me. He was so supportive during this time. He knew I was ill and was simply there for me. I will never forget how loving he was.
I still couldn’t sleep. My partner has told me recently that during this time I hadn’t slept for 5 days, with only 10 minutes of light sleeping here and there. I would look in the mirror and not recognise myself. I loathed myself. I didn’t deserve sleep. I didn’t deserve food. I was an awful person for wishing harm on the baby. I had no idea who I was, or what I had become. I wrote down confusing thoughts. I even wrote a bit of mad poetry. I think I was searching for my baby through words. I was searching for myself through words.
I spent two nights in the maternity ward at The Royal Gwent. I was on constant observation as my actions were so impulsive. I had to talk and talk and talk to different faces to try and explain what I was seeing. It felt so loud in the room. All I could hear were voices and hospital trolleys. My mind was constantly racing. I had no concept of time. I would look at the clock and 5 hours would have passed and it would feel like 5 minutes. I believed I was allowing my baby to starve so I deserved to feel pain. I started refusing to take pain relief for a third degree tear I developed during child birth. I needed to feel something real. I was harming myself by starving myself and refusing relieving medication.
I was still having visions. I saw lots of shadows around people’s faces. I was still seeing images of dead babies on posters. I thought the child I had in front of me hated me. I was starting to really believe he wasn’t mine. I felt nothing for him. This makes me feel sad writing this because now that I am recovering I love that little boy more than anything in the world. I would go through it again, a thousand times over if it meant I could keep him forever. However, at this point all I was feeling was pure fear. I pleaded for people to help me get better.
More sad news came about, the baby needed to be admitted to hospital. He had developed an infection in his belly button. My partner told me this and I didn’t even react. I believed at this point that he wasn’t mine. I started to believe the baby in front of me was someone else’s and that mine had died. Eventually, I was transferred next to a mixed-sex psychiatric ward, while professionals waited for funding to come through from the Welsh Government for me to be transferred to a mother and baby unit in London. I stayed in the psychiatric ward for 4 days, away from my partner and my baby.
My condition worsened whilst on the ward. The ward felt like a grey prison. The walls were grey and my room was very similar to that of a prison cell. The delusion that my baby had died and that I was put in jail because I didn’t look after him properly became so real I would wail and wail in the night. I would cry ‘He’s gone,’ ‘I’ve killed him,’ ‘I’m sorry, I’m sorry, I’m sorry.’ Mental health staff held my hand to go to sleep. I had to take medication during my episodes to help me calm down. I spent the days in my room. Packing and repacking my bag for London. I was still on constant observation, the door of the room remained open through my time there and someone would sit and watch me 24/7. This was for my own safety. The antipsychotic medication had started kicking in but I still truly believed my son had died. All I felt was pure grief and guilt and was severely suicidal.
I felt alone throughout the entire illness. Despite others telling me that my son was ok and alive I just couldn’t feel it. I would tell them that in my head he’s alive but in my heart I feel that I have lost him. I would allow myself to feel no comfort. I had failed to look after my boy and I felt like a terrible mother.
There is a lot of evidence that suggests that being apart from your newborn could further jeopardise your bond. The longer I spent away from him, the thought that he had died became more and more real. I only saw my baby once during my stay at the psychiatric ward. I felt excited and nauseous with anxiety at the thought of seeing the baby. A lovely psychiatric nurse went into a quiet room with me before they arrived. Steve came into the room and I gave him a frightened hug. I was shaking. He showed me the baby. I looked at the baby and saw the vision of him angry. I started crying in distress. I felt I had seen a ghost. I was so scared Steve had to take the baby out of the room until I calmed down. I tried so hard, I kept trying to tell myself that he was mine, but I just couldn’t truly believe it. The visit was exhausting. I had never felt so low and disconnected from myself and my son than I did in that ward.
I believed I had brain damage. I know now that one of the symptoms of PP is severe confusion. I couldn’t remember little things like how to spell my babies name, what day of the week it was. I couldn’t remember my words and I repeated myself a lot. I developed a nervous twitch and a stutter.
I was found a space at Coombe Wood Mother and Baby unit, in London. I travelled in a car with two mental health nurses whilst my partner drove behind with my mother-in-law and the baby. The nurses were kind and kept telling me that I will improve in no time in the next place and the baby would be able to stay with me. Despite being full of fear and despair during the chaotic car journey up, I was slowly clinging on to the hope that they could all be right.
I arrived at the mother and baby mental health unit disorientated, exhausted, timid and severely confused. I had no idea as to which part of London I was in. I had never felt so lost. Somewhere deep inside, I was clinging on to the hope that I will be reunited with my family. I was starting to believe that my partner was going to steal the baby from me. When my family arrived, My mother-in-law sat next to me on a sofa with my baby in her arms and I couldn’t look at him. I just cried. I was afraid to look as I believed my baby had died.
I remember feeling how bizarre this illness was. How bizarre the last two weeks had been. I felt as if I was going to be locked away forever. The first morning at the unit was a little clearer. I was so happy to be reunited with my partner after what felt like an eternity without him. I believed we were on holiday and felt extremely happy. When I felt manic it was a large aspect to it that was fun. When your that high, its like you’re driving fast in a car without the break pedal. It’s fun but also terrifying and deadly.
My partner was allowed to stay at the hospital every weekend which was amazing. One of the hospitals ethos was to keep families together as much as possible. I was able to go anywhere in the building and I noticed the garden they had outside. The morning after we arrived we made a cup of tea and I went outside. I had only realised that I hadn’t been outside since the baby was born, only to go into ambulances and cars. The baby was two weeks old by this point. I looked up at the sky and felt I had been freed from years in prison. The sky was blue and I found it beautiful. This were sparrows and magpies. I finally felt a moment of peace after a long time of misery. It was then that I realised the worst was behind me and I was going to get better here.
I was treated in hospital for nearly 3 months. At the mother and baby unit, there were health care assistants around the clock helping me look after my baby. I had access to baby massage and a sensory group that helped me bond with him. Staff would mind the baby at night in order for me to sleep. After 2 weeks, I ate a full meal. My Psychiatrists and the Consultant kept a close eye on my medication. I received Art Therapy and EMDR Therapy. I was diagnosed with PTSD and Maternal OCD following the psychosis.
Every staff member and patient came from all over the world, Portugal, The West Indies, Jamaica, South Africa, India, Romania, Italy, New Zealand, England, Scotland, Northern Ireland, Croatia, Nigeria and so on. I felt the world had come together to help me and my baby. I am eternally grateful to everyone who works at Coombe Wood. It was a hospital full of love. I had support from the other mothers too, mothers who got how I was feeling. Even though it was the hardest time in our lives, we eventually found ways of laughing. I made very dear friends there. Everything would become a little bit clearer as the days went on. The moment I realised that the baby had been mine all along was emotional. Our bond grew from there and it is still growing now. I believe now that love wins all.
My experience has led me to believe that there is a large stigma surrounding Mental Health. It is often not talked about and dismissed. I hope that when people read this blog, they will have an insight into the warning signs of this dangerous illness. I hope it provides help to other survivors of PP. I hope that one day The Welsh Government agrees to set up a Mother and Baby Mental Health Unit here as it is so vital.
I urge anyone to sign petitions and fight for it. It is our collective responsibility to provide help and support mothers who are struggling with all postnatal illnesses.