Kayleigh’s story: I was so unwell I was completely catatonic and unresponsive. But now I feel like we have the perfect family

When I suffered with postpartum psychosis after having my first daughter Daisy in 2014, me and my family had never heard of this illness. I had never suffered from any mental illness in the past but I was lucky that my family and my midwife knew that something wasn't quite right and I got the help I needed very quickly.

My labour with Daisy was long, painful and complicated which ended in me having an emergency c section. When she finally arrived I was so grateful she was here safe and healthy. I was totally in love with her, it felt like I was in a little bubble. The baby who we had waited so long for was here and life was perfect.

When it was time for us to leave the hospital I suddenly felt a huge wave of fear.

This tiny little baby was my responsibility to keep safe. What if I couldn't do it? What if I forgot something? How could I keep her safe from everything? I remember getting her ready to leave the hospital panicking if I had enough layers of clothes on her, would she be warm enough or would she be too hot, had I put her in the car seat right, was her head supported enough....

When we got home things started to get worse. I couldn't sleep at night thinking about all the things I needed to do and worrying I wouldn't have time to do it. I would have bursts of energy feeling like I was able to do everything at once then I would have times when I couldn't even feed Daisy feeling like I would do it wrong. I started making lists in case I forgot to do things like feed her and change her. I was frightened to bath her in case I did it wrong.

I became very suspicious of my midwife and health visitor thinking that they were coming to take my baby away from me and that they had been planning this my whole pregnancy thinking I was a bad mam. When watching telly I thought I was getting messages warning me that bad things were going to happen, that our family dog would attack the baby.

On advice from my midwife I was taken back to the maternity ward where things got frighteningly worse. I suddenly lost sight of reality and thought I had died during childbirth and that I was going to hell for something bad I had done. I remember screaming out to my husband to help me as I didn't know what to do. I was assessed by the mental health crisis team and the decision was made to section me as by this time I wasn't communicating. I had gone into a catatonic state and I couldn't move my body. I remember being put into a wheelchair and I didn't know where I was going. I felt like I was in a dream and that I needed to fall or jump to wake myself up.

A bed became available for me and Daisy at St George's Mother and Baby Unit in Morpeth so I was transferred there by ambulance. I could see my family around me but they didn't seem like the people I knew and loved - they felt like intruders or actors. I was very suspicious of them thinking they were going to hurt me.

When I arrived at the Mother and Baby Unit I thought I was being taken to hell and that I would be locked in a dark room forever and that horrible and unimaginable things were going to happen to me. I was still catatonic so in my mind I was dead and that's why I couldn't move or speak. I was given medication to help me get out of the psychosis but I was still unresponsive so I was then taken to another hospital for a brain scan to see if there was anything else going on. I remember being in the ambulance but I felt like it was all fake like they were trying to trick me into thinking it was all real. At this point I still wasn't aware of what was happening to me and I still hadn't spoken for hours. I remember being put into the machine for the brain scan and thinking I was going to be abducted by aliens. I jumped up and this was the first time I had spoken or moved in hours. The catatonia was over but my thoughts were still spiralling out of control.

I was taken back to the Mother and Baby Unit and as I walked down the corridor I could see all my family waiting for me. I could see white doors at the end of the corridor, which were actually fire exit doors, but in my mind they were the doors to heaven and I was walking there to say my goodbyes to my family.

I don’t remember much after that but the medication must have been taking effect as it helped me to sleep for the first time in days.  When I finally woke, I realised I wasn't actually dead and everyone in my family was ok, my baby was ok. I felt like I had won the lottery. The feeling was unreal and I explained to my family what I had felt and thought. It was as if all the craziness had lifted from my mind and I was me again. I was so happy to be alive.

Unfortunately, that feeling didn't last long and I was hit with a wave of crippling depression which consumed my mind. I felt like I had lost my bond with Daisy and I didn't really want to see any of my family apart from my husband Dave.

I thought I would never get better and was going to spend the rest of my life in hospital.

As the days and weeks passed, I was allowed to try an overnight home visit, thinking back at the time I don't feel I was ready for this. The Mother and Baby Unit had now become my safe place. I knew I could look after Daisy there as I had the help of the nurses. But at home it was all on me and I didn't think I could do it. I was right, as soon as I got home the rooms seemed smaller, the fear, the anxiety, the depression it all came flooding back. Then I hit rock bottom, I felt like I didn't want to be here anymore, I wanted to just curl up in a ball on the floor and die. I needed a way out of this. I couldn't see myself getting any better. I couldn't live like this. I thought Dave, Daisy and my family would all be better off without me. I thought of ways to end my life. This was the lowest I had ever felt.

I had relapsed and couldn't make it through the night at home. I broke down and the only option my family had was to take me back to the Mother and Baby Unit.

Over the next few weeks I was helped by the nursing staff and psychologists to put things in place so that I could return home and I did, this time only for a few hours but it was lovely, totally different from my last home visit. I felt like I was where I should be at home with my beautiful little family.

Home visits became more regular and I was now spending a week at home. Everything was starting to click into place and it felt amazing. I finally believed I could be the mam that I had always wanted to be. I was discharged from the Mother and Baby Unit after six weeks and could finally start enjoying normal life again as a family. I was to continue with my medication for 12 months and be supported by a community mental health nurse who would visit me at home. I continued to recover from the illness but did relapse a year later, again out of the blue, but this time I could be supported at home and did not need to be admitted.

In 2017 we decided that we would try for another baby. We knew the risks and that there was a 50/50 chance that I would become poorly again but I was determined to put things in place this time to ensure it didn't happen. I was placed under a consultant who I would see regularly and I stopped my medication. We were lucky enough to fall pregnant quite quickly and plans were put in place for me to try to prevent another episode of postpartum psychosis. I was given the option to return to my medication soon after having the baby. I would also stay on the maternity ward for five days after the birth so I could be monitored, and a bed was even held for me at the same Mother and Baby Unit in case I needed it.

On 1st August 2018 after the most perfect labour our second daughter Jasmine was born and our little family was now complete. I agreed to stay on the maternity ward for five days after birth as that's when my psychosis happened with Daisy and I was advised if it was to happen again it would be the same time frame. Everything was perfect. I didn't have any of the anxiety or depression that I had experienced previously and we could go home and enjoy life as a family of four.

Eight lovely months passed and we were the perfect family. Then one day the hallucinations came back and I started to see and hear things that weren't there. Having felt like this previously I told my husband Dave that I thought my psychosis was happening again. My family contacted the crisis team and by the time they came to assess me I was catatonic again. I was sectioned and admitted for the second time to the same Mother and Baby Unit.  I have been told by my family that this psychosis was way worse than the first and I'm thankful that I actually don't remember a lot of it. I think my mind somehow blocked all the bad stuff out. It took longer for the medication to work this time and after a while my family were concerned that I didn't seem to be getting any better.

It was agreed by my family that I would have electroconvulsive therapy (ECT) which is a treatment that involves sending an electric current through your brain. This causes a brief surge of electrical activity within your brain and helps to relieve severe symptoms of mental health problems. The treatment seemed to work, and I was again allowed home visits starting off with a few hours, then progressing to an overnight stay. Eventually, I was going home for a full week’s home leave.

As with my previous episode of psychosis, I was discharged from the Mother and Baby Unit six weeks after being sectioned. To this day I continue with my medication as I know this is a huge preventative measure to stop me having psychosis in the future.

It’s now been over five years since my last psychosis and for the first time I’ve felt ready to share my story and raise awareness of this heartbreaking illness. Me and my husband Dave completed a 27 mile charity walk in May for which we walked from our house in Sunderland to St George’s MBU in Morpeth to raise funds for Action on Postpartum Psychosis.  We left our home at 5:40am and arrived at St George’s at 4:10pm, 27 miles and 10 and a half hours later, greeted at the end by our lovely daughters Daisy and Jasmine which was a very special moment.

We have the perfect family with our two beautiful daughters and because of what we have been through together it makes me even more grateful for what we have. The whole experience has definitely brought us closer together.