Written by Willemijn Ellen de Bruin, MSc
Edited by Cheri Wissmann and Teresa Twomey
You likely already know the statistic that 1 to 2 out of every 1,000 new mothers experience postpartum psychosis. Those familiar with the scientific literature may also be aware that this epidemiological statistic applies to a specific time period and outcome – the first three months following a live birth.
At an individual level, expectant women may be tempted to dismiss the risk of PPP (which is 0.1-0.2%) and think – not me, surely not. However, because this illness can impact anyone who becomes pregnant or gives birth – and when it does it is often a devastating experience and can result in tragedy – all expectant parents should be educated about this and be prepared.
Let’s do some simple mathematics with the incidence rate of 1 to 2 in 1,000 at a population level to put things in perspective:
- The provisional number of births for the United States of America in 2021 was 3,659,289. With an incidence rate of 1-2 in 1,000 we are looking at around 3,659 to 7,318 women who experienced postpartum psychosis within the first 3 months after birth.
- In the United Kingdom, 1-2 out of 1,000 births that same year would have been between 694 and 1,389 women experiencing PPP2. I was one of them – suffering postpartum psychosis shortly after the birth of my son in January 2021.
- Globally, we are looking at a staggering 133.97 million births over the course of 20213, meaning that there were between 133,970 and 267,940 women who experienced postpartum psychosis within 3 months of giving birth.
Do you get my point?
At a population level, whether that may be your local municipality, your state, county, or province, your country, your continent, or the world — we are talking about significant numbers of women who experience postpartum psychosis on a yearly basis.
These numbers are even higher in reality, as research indicates that psychosis can also occur at and be related to other times during the perinatal period, such as: during pregnancy, at a later stage postpartum (between 3 months and 12 months postpartum), and after miscarriage, abortion or stillbirth. However, the first three months postpartum are generally recognized as the period of greatest risk.
Those affected suffer a severe and acute onset of mental illness after giving birth, with symptoms of hallucinations, delusions and/or confusion, in combination with mood disturbances of mania, depression or a mixture of both. Both the mother and her children are at acute risk (including the risk of suicide and infanticide) and postpartum psychosis should therefore always be considered a medical emergency that requires adequate treatment.
Without diving into too much of the details of my own story, I can say that despite being unlucky enough to be one of the thousands (between 133,970 and 267,940 to be exact) who suffered postpartum psychosis worldwide in 2021, I was extremely fortunate to be diagnosed timely and adequately, and to be in the right place at the right time. I was living in one of the 19 cities in the United Kingdom that happens to have a specialized Mother and Baby Unit (MBU), and that facility was able to offer me a hospital bed the very same day.
It saddens me to say that the majority of the countries in the world, including developed ones such as the United States of America, have no dedicated psychiatric facilities where mothers can be admitted for inpatient mental healthcare alongside their babies. Even countries that do have MBUs, such as the UK and Australia, usually do not have enough of them to cover their population and geographical regions.
In most countries there are no adequate perinatal mental health services – full stop.
There is hopeful news though – PPP is a highly treatable illness and those who suffer can make a full recovery. As one of the nurses who cared for me said (in her Northern English accent): “We can really nip it in the bum.”4
But there are still too many missing pieces when it comes to ensuring accurate and timely diagnosis as well as providing adequate care. When we consider the numbers above, this is an international public health failure. Even by conservative measures, we are failing mothers, babies and families every day, in every place.
Globally, is it clear we are lacking:
- Appropriate awareness and preparedness for expectant parents and their families
- Adequate training for all types of professionals who support growing families
- Timely and adequate diagnosis
- Accessible, appropriate, and non-traumatizing care
So, what is my call for global action?
First and foremost, let’s unify.
In a post-pandemic era, we are in a good position to bring a wide variety of people together online, and the chance of us having a positive impact is simply higher when we join forces.
Let’s unify around a wider concept of “PPP survivor community,” and bring together those who have lived experience of perinatal psychosis, those who have a loved one who has experienced perinatal psychosis, and those who are advocates for improved care for this illness.
Collectively, let’s make demands for:
- More research and global collaboration among the researchers, healthcare providers, policy makers and funders to improve understanding and guide best practices for prevention and treatment.
- A big push to raise awareness of pregnancy and postpartum psychosis globally.
- Advocacy for improved perinatal mental healthcare services, and specifically more mother and baby units.
- A safe (online) space for survivors to find peers, as well as provide a platform for those who feel ready to share their story in public to support the above causes.
I know that in this article I applied my international public health lens, but at the end of the day a number is just a number, and it is the voices of survivors that truly count.
Let’s work towards more stories with a happy ending!
About the Author
Willemijn suffered PPP ‘out of the blue’ (without any prior mental health conditions) after the birth of her son in January 2021. She is originally from the Netherlands but has lived and worked in various countries spread over four continents; at the time of her psychosis she was living in the United Kingdom. The fact that she had become unwell with postpartum psychosis was thankfully picked up quickly by her partner who noted “unusual behavior and just knew something was not right” and a community midwife making a postpartum home visit. The mental health crisis team was informed and after assessment at home, she was referred to a specialized psychiatric Mother and Baby Unit in her hometown, Nottingham. In this unit, she was cared for by a team of perinatal mental healthcare professionals, while at the same time being able to bond with, nurse, and care for her baby. During the recovery trajectory at home after her discharge, she was supported by the outpatient team of the clinic and through community perinatal mental health services, as well as great care of her family and friends. Within a year she fully recovered from her illness and currently lives a happy life with her partner and son in Sri Lanka. She did not realize it at the time of being ill, due to delusional thoughts and severe paranoia, but as put in her own words she was “damn lucky to receive the quality of care that she did, despite being sh*t out of luck for suffering PPP in the first place.”
Willemijn is a public health scientist (MSc International Public Health from the VU University of Amsterdam) who works in the international development sector focusing on health (especially maternal (mental) health and Sexual Reproductive Health and Rights (SRHR)), gender equality, and youth empowerment. For more about her story and work, please visit: www.we-consultancy.org
1 Definition of incidence rate: “incidence refers to the proportion or rate of persons who develop a condition during a particular time period.”
2 Total of 694,685 births, based on: 624,828 live births recorded by the Office for National Statistics for England and Wales, 47,786 live births registered through National Records of Scotland, and 22,071 births registered through the Northern Ireland Statistics and Research Agency.
3 Our World in Data based on United Nations Population Fund statistics.
4 English is my second language but I believe this should be bud (with its origins in gardening) but often confused as butt, and now evolving to bum. Quoted from interview with MBU Healthcare provider, Nottinghamshire NHS 16-10-2022.