Second pregnancy following ECT

[Olanzapinelenny]

Hello, reaching out to hear any stories of anyone who required ECT during PP and has went on to have second pregnancy or daughter advice?

[Hannah_at_APP Administrator]

Hello, I had PP 15 years ago now and had ECT as part of my treatment in both general wards and an MBU.

I know it's an emotive subject and often brings strong reactions based on individual experiences, but for me it was a positive experience and I feel lucky to be able to say that as I know it isn't that way for everyone. The ECT was started whilst I was still under section as various medication wasn't working, or at least not quickly enough. For me, the ECT gave the extra "something" that was needed as I was becoming dangerously ill physically as well as mentally. I'd stopped eating and drinking and had become almost catatonic after the mania and psychosis had "burned out" and left me in a terrible state. I don't remember the initial sessions but did agree to stay as an informal patient at the MBU for a further period of time and had a total of 12 ECT sessions, the last part of which I do remember - for me, it was a turning point and was possibly life-changing, even life-saving.

I had another child 4 years after I was unwell and had a very different experience in terms of pregnancy, birth and also postnatally - and thankfully no recurrence of PP. I've never been unwell before PP either and don't have a bipolar or other diagnosis so was aware I was at risk because it had happened before. I'd also found APP and was volunteering on the forum as a peer supporter too, so the stories here had been really good to hear. But we also knew that I had been unwell and got better once, so we believed that it was possible to get better should PP strike again. It's a very personal choice whether to have further children but for us it was the right decision. I feel lucky to be able to have that support around me from family, friends and also healthcare professionals - to a point, there was no perinatal or specialist teams where I live at the time (2013), the MBU I was in had closed and care is still patchy now with large distances to nearest MBUs.

When I was expecting my youngest, we made plans of what we would like to happen - with the pregnancy and antenatal care, the birth, immediately afterwards, if I'd become ill again, and also what my early warning signs were. We saw it as "planning for the worst and hoping for the best" and made decisions which were deliberately different to what had happened after my eldest. I've no idea if this had any bearing on the outcome of staying well and whether the 50/50 chance was just bad luck the first time and good luck the second - we never wanted more than 2 children so I won't be trying it out again! Part of the planning was making decisions whilst I was well that we documented and asked for them to be followed if I then lost capacity to make decisions - also who I would like to speak for me (and who I wouldn't). Importantly, I wanted my eldest to be looked after and not around if I had become unwell. Some of this was practical things around childcare for the early weeks so he could go to friends and family, still get to playgroups etc, which we found really useful to think about when having a baby anyway so the older sibling doesn't feel left out.

I made a choice that I wanted to travel to an MBU for treatment if needed rather than stay at home or go to a general ward - we chose one where family/ friends could get to easiest, rather than one we might have gone to as a lot of other services for mental health and maternity may have referred there instead. I don't know whether this would have happened in the end as we happily didn't need it. I also made the decision that although I'd prefer not to have ECT, if needed I would have it again as I knew it had made a difference for me before. Part of our mantra through the pregnancy was that it couldn't be as bad as the first time. When I had PP, because I'd never been unwell and nobody knew what was going on, it took some time to get the right support and in the right place. We definitely felt there were some missed opportunities to get me help quicker. And perhaps I wouldn't have become so ill that I needed the ECT - but ultimately we will never know. I also appreciate also this is over a decade ago and awareness should now be better...

ECT has been a controversial treatment; it is not used in the same way now that it once was. But I know it's a scary thought, and was for me, my family and friends too. I chose to continue it as I couldn't remember anything from a period of about a month. One of my earliest MBU memories is the Drs telling me the name of the illness I had (which I'd never heard of) and giving me a leaflet about ECT and asking if I would consider continuing it, as it'd really helped me so far and they wanted me to continue making the progress I had to date. I know I was terrified of the thought of it, but I was more scared of losing more of my life to being unwell. One of the side effects of ECT can be memory loss, but other than that first month, I actually have quite a lot of memories from my illness and the years before then too and also since. People tell me my memory is pretty good - again I know this isn't everyone's experience and I am really lucky. There are stories on the APP website including some who have had ECT as part of their treatment: app-network.org/category/ou...

There are now formal documents which capture all this formally but we wrote it all down on A4 and added it into my maternity notes. Everyone found that quite useful, especially if I'd not seen them before as it saved us all having to repeat things, explain PP over and over again - that did still happen at times though! A perinatal community team should now be able to support in a further pregnancy after PP if you are in the UK and a GP or midwife should be able to refer you. There's also some info and templates on the APP website about Advance Choice Documents (ACDs) here: app-network.org/postpartum-...

I realise this is a lot of info but hopefully some of it is useful to you in making decisions about further pregnancy after PP and ECT. I have 2 sons so don't have the same considerations about if I'd had a daughter and what to tell her but there is some info about talking to your family in the APP Insider Guides:

Planning Pregnancy: app-network.org/wp-content/...

Being a Parent: app-network.org/wp-content/...

I know I make sure to talk to my boys (now 15 & 11) about mental health as it can affect anyone, at any time, and they might one day be Dads too. That makes me feel very old - hopefully it's not too close in the future!

Wishing you well in your decisions - it's a lot to think about but further pregnancies after PP and ECT can be really well supported, as well as talking to family members about your experiences. All the best, Hannah x

[Olanzapinelenny in reply to Hannah_at_APP]

Thank you this is incredibly helpful and hopeful x