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WRISK – understanding and improving communication of risk during pregnancy

Posted on February 8, 2019October 10, 2023 by Clare Foster
A quick summary:
  • Mental health vs. pregnancy – coping with simplistic and conflicting medical advice on antidepressants
    • Coming off anti-depressants while trying to conceive?
    • Coming off anti depressants during pregnancy?
    • Mental health agendas vs. pregnancy agendas
    • Reading and research
    • Pregnancy, parenting and breastfeeding on Sertraline

The WRISK project is a collaboration between the British Pregnancy Advisory Service (bpas) and Heather Trickey at the School of Social Sciences at Cardiff University. They are aiming to draw on women’s experiences to understand and improve the development and communication of risk messages in pregnancy.

They asked me to blog about my experience of taking (and trying to stop) antidepressants before conception, during and after pregnancy. I was happy to oblige. I was given conflicting and simplistic advice from various GPs. They failed to give proper weight to the complexity of my experience and used the concept of risk to make me feel guilty and disempowered. This needs to change and I’m glad to support the WRISK project in trying to do so.

Edit – the WRISK project has now concluded and the blog is no longer online so I have reposted it below.

 

Mental health vs. pregnancy – coping with simplistic and conflicting medical advice on antidepressants

 

Coming off anti-depressants while trying to conceive?

 

In 2016 a GP recommended I come off my anti-depressants (Citalopram and then Sertraline) while trying to conceive. With stories like this one in mind, I did my best. It was one of the worst three months of my life. I wrote about it here.

 

When I finally fought through the initial withdrawal symptoms I thought things would get easier. Instead they got harder. More chest pain. More tears, panic and anger. Suicidal thoughts. More running. More fighting my body.

 

I was so stressed and exhausted my periods stopped. It took three months to realise I couldn’t do it. That nothing was worth the destruction wreaked on my body, our health and our relationship.

 

Another GP in the same practice told me I shouldn’t have stopped taking them. Additional stress can make it harder to conceive. This turned everything upside down, leaving me shaky, tearful and confused.  It had only been the certainty I was doing the ‘right’ thing that had kept me going.

 

I thought I wasn’t myself on medication. Turns out it helps me be myself. Without it I was a dark anxious shadow. My world narrowed, anxieties bulged and took over. I retreated into myself and lost the strength or clarity of thought to control eating or exercise demons.  

 

Almost as soon as I restarted Sertraline, my periods came back. Eight months later we got a positive pregnancy test for the first time.

 

I’m not angry about the conflicting advice around stopping medication before we conceived. I think I had to go through it to help me feel comfortable in my decision to keep taking them through conception and any potential pregnancy.

 

Coming off anti depressants during pregnancy?

 

I’m more upset about the advice I received (and the almost flippant way it was given) when 17 weeks pregnant. 

 

In the meantime we had moved away from London and so it was another new GP who told me I should come off again. She told me that 50mg was a low enough dose to allow me to stop immediately or I could take it every other day for a couple of weeks and then stop.

 

I told her that last time I tapered my dose for over two months and it didn’t stop the horrible withdrawal symptoms. She seemed convinced the main reason I found it hard before was because I was anxious about trying to conceive. In the appointment time we had it was hard to explain that it was considerably more complicated than that. I did try but felt increasingly emotional and unsure of myself.

 

Mental health agendas vs. pregnancy agendas

 

When you are pregnant and also manage mental health problems you have lots of people telling you what to do. Different authorities often have slightly different agendas, follow different recommendations and suggest different things. It feels like an extra layer of disempowerment and it’s hard not to get caught between what’s best for your mental health and what’s recommended in pregnancy.

 

I have:

 

  • personal experience that strongly supports staying on antidepressants,
  • a well considered and discussed (with a doctor and my husband) decision to start taking them again,
  • an awareness of the power imbalance implicit in a doctor’s consulting room,
  • access to a lot of relevant research that emphasises the importance of maternal mental health and the danger for both mother and developing baby of coming off when it isn’t appropriate,
  • an awareness that the risk referred to here is pretty small and that everything (including stopping taking medication) has both risks and benefits – I shouldn’t take the fact that something has a risk associated with it as an automatic reason not to do it, and
  • an awareness that doctors are told to advise women to stop as there is very little safety info but this is a precaution and for some women it can be better for them and their baby to remain on medication.

 

Despite ALL this, I still walked away from the doctor feeling pretty wobbly.

“Maybe I should try again if that’s what the doctor recommends”.

 

It took another discussion with my husband and some more reading and research to help me feel confident in my initial decision again.

 

Reading and research

 

That GP said stopping medication was ‘recommended’. A look at the relevant NICE guidelines suggests a rather more subtle approach  – and an informed discussion of the relevant risks and benefits of treatment options.  Perhaps GPs need more support to do this well.

 

Drugs are not clinically tested in pregnant women. We don’t know a lot – even the studies and research that have been done are very small and there are lots of unanswered questions. But my understanding is as follows.

 

It’s controversial.

 

Antidepressants are often considered a ‘luxury’ medication like ibuprofen or a sleep aid – a view that seems to stem from a misunderstanding of the nature of mental health problems and the role of medication in treating them.

 

As far as we have been able to determine, these may be reasons to keep taking them.

 

  • Stopping antidepressants in pregnancy may cause a relapse in up to 60-70% of cases.
  • Antenatal depression has been associated with low maternal weight gain, increased risk of preterm birth and low birth weight (among other things).
  • Children exposed to perinatal depression (depression before or after birth) have higher cortisol levels. Treatment of maternal depression during pregnancy seems to normalise infant cortisol levels.
  • Untreated depression during pregnancy is one of the highest risks for postnatal depression.

 

There are lots of things we don’t know about any potential risks.

 

  • There have been some (conflicting) studies looking at the association between SSRI antidepressants and persistent pulmonary hypertension (PPH) in newborns. Two studies suggest they are associated, but a more recent one has disputed this association. The FDA says it is unclear. In any case, the relative risk is still a very small absolute risk.

 

  • Some studies have suggested that newborn babies may experience withdrawal symptoms if mothers take medication in the third trimester. But there haven’t been enough studies of the syndrome to even define it properly, let alone understand how to mitigate its effects. We certainly don’t know enough to recommend tapering antidepressants in the third trimester. What we do know of the symptoms so far is that they usually appear mild and short lived.

 

Pregnancy, parenting and breastfeeding on Sertraline

 

Further on in my pregnancy I spoke to a wonderful midwife who said that, based on my notes and history, the most sensible thing I’ve done is continue with the Sertraline. She was right. I am fairly sure it was the best choice for my son, my husband and I.

 

When Oaklan was born he was monitored in hospital for 48 hours to check for any withdrawal symptoms. He was absolutely fine. Since then, postnatal mental health difficulties have meant I’ve increased my dose to 100mg/day. 16 months later I’m still breastfeeding a healthy toddler, one who is much happier for the fact his mother has the appropriate support for her mental health.

 

Noone can ever be completely certain they have chosen the ‘right’ path for them and their family. But it doesn’t help when we receive simplistic advice that fails to give proper weight to the complexity of our individual experiences and uses the concept of risk to make us feel guilty and disempowered.  

2 thoughts on “WRISK – understanding and improving communication of risk during pregnancy”

  1. Pingback: 18 years ago I was prescribed antidepressants as if they were painkillers. Now I think I’m stuck on them for life. | Clare Rose Foster
  2. Pingback: Pregnancy loss and mental health – new resources online now | Clare Rose Foster

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Wow! This is a wonderful example how good consultation and understanding your audience can lead to great quality information! The consultation, planning, and promotional plans show excellence in producing health information. This shows through in the end products – high quality and extremely well-tailored to the audience. The insight and thought that has gone into this is commendable. 

Dr Hannah R Bridges – HB Health Comms Ltd

Clare created fantastic bespoke moderator training and helped us develop our brand-new survivors’ community. She went out of her way to ensure that the training met our needs exactly by engaging in various in-depth discussions and learning about our sector. But beyond that, she also helped us to build our vision for the community and the community guidelines; created an editable handbook for our future use and changing needs as the community grows; and offered ongoing support with tweaking the training as the forum develops.

Venice Fielding - Cardiff Women's Aid

Clare highlights the wide range of feelings and reactions during and after pregnancy loss, the different impact that each experience can have on each individual and the diverse needs of those affected. Just as important, she acknowledges the difficulty of those who want to offer help, but aren’t sure how to, or when. She makes it easier for them to understand and empathise, and offers practical suggestions with knowledge and also with humility… This is what makes for such a special book, for which many many people will be grateful.

Ruth Bender Atik, National Director, The Miscarriage Association
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