By Amber-lee Buendicho
@thepowerofbirth
It's Hyperemesis Awareness Day, May 15th. Firstly, let's get one thing straight - Hyperemesis Gravidarum (HG) is not morning sickness; it's a debilitating condition that can have severe consequences for both the mother and her family. The recent story of aussie pregnant mother and HG sufferer, Jessica, driven to attempt suicide, later losing her and her baby's life, due to negligent medical care, highlights the urgent need for a better understanding of HG worldwide.
Full disclosure, I am a HG survivor, not once but twice, enduring the torment of hyperemesis gravidarum in both of my pregnancies, just six months apart and mostly not knowing what the hell was happening to me. Despite being repeatedly told it was merely "morning sickness" that would fade, HG persisted throughout both pregnancies, ultimately leading to a diagnosis of PTSD 12 months after my second child's birth. It's a trauma I hadn't even known existed within the realm of pregnancy until it became my reality. I often get asked to describe what HG is like, the only explanation that remotely captures its reality is 'poison'. To me, pregnancy = poison and it left an indescribable impact on my life—both physically and emotionally—requiring extensive time and resources to heal. I can't help but wonder if adequate support and recognition of HG within maternity care and medicine could have altered my journey, perhaps even that of others like Jessica.
In the realm of pregnancy-related complications, hyperemesis gravidarum (HG) stands as a distressing reality for a small yet significant proportion of expectant mothers, affecting approximately 2%-10% of all pregnancies, and I suspect that is severely underreported. Despite hyperemesis gravidarum being the leading cause of hospital admissions among pregnant women in Western countries, there remains a troubling pattern of suboptimal management and support from healthcare professionals. This neglect is largely rooted in a pervasive underestimation of HG's severity, with its symptoms frequently dismissed as mere pregnancy discomfort rather than recognised as a debilitating medical issue. To address the realities of HG, we must start by acknowledging its severity and complexity. Healthcare providers need to be educated about HG and be equipped to provide appropriate care and support. Additionally, destigmatising HG in the public discourse is essential to ensure women feel validated and supported rather than dismissed or marginalised.
The difference between morning sickness and HG taken from HER Foundation website: https://www.hyperemesis.org/who-we-help/mothers-area/get-info/do-i-have-morning-sickness-or-hg/
Debunking the Myth of It Being All In Your Head
Women have a history of not being believed. Just take a look back to the late 18th century, when hysteria was slapped on any woman who dared to express emotions or show signs of distress. It was a catch-all diagnosis for everything from depression to anxiety to chronic pain—and it was all too conveniently dismissed as just being a "difficult, erratic, unstable, hysterical woman." This narrative seeped into the very fabric of our understanding of women's health, perpetuating gender bias and sexism that still lingers today - we're still fighting the same battle. Women are routinely gaslighted and invalidated when they speak up about their pain and experiences, even more so for minorities. Just look at the countless stories of women being dismissed by doctors when they complain of symptoms of preeclampsia, endometriosis or even heart attacks. It's infuriating, it's unjust, and it's downright dangerous. We cannot continue to ignore the systemic issues that undermine women's voices and experiences in healthcare. It's time to dismantle the patriarchal structures that perpetuate this cycle of disbelief, incompetence, ignorance and start listening to women—loud and unapologetically.
That leads me to the point of HG. So many women who experience HG think that they have done this to themselves, that it's all in their heads, and if they could just get up and get on with life it would all go away. It's no wonder they feel this way when healthcare providers don't even know HG exists and treat them as if they "just have morning sickness" or family, friends and acquaintances don't believe pregnancy sickness can be 'that bad' and expect these women to carry on as normal. Much of the early literature on HG was telling women and the world that it was all in their heads despite chronically problematic methodological limitations. For years, HG has been erroneously linked to psychological factors, with some medical perspectives attributing it to a manifestation of underlying psychological traits, specifically suggesting a connection to conversion disorder [Sigmond Freud believed that unexplained functional symptoms reflected an unconscious conflict and in this context, a diagnosis of conversion disorder suggests that the intense emotional distress experienced by women with HG may manifest physically due to unresolved psychological factors]. Recent research with rigorous methodology found a significant distinction: women experiencing HG during pregnancy consistently showed higher scores on conversion disorder scales compared to those without HG. However, these differences vanished post-pregnancy, indicating that the heightened psychological traits observed during HG are specific to the condition rather than enduring characteristics. In essence, modern research serves as a crucial rebuttal to the notion of HG as a psychosomatic illness - so it's not all in your head, you aren't hysterical and you're not doing this to yourself but HG research is limited in volume and so the narrative continues. The evidence we have emphasises the need to approach HG as a distinct medical condition with its unique challenges and considerations.
The Impact of HG
The challenges of managing HG extend beyond medical complications, deeply rooted in socio-cultural aspects that exacerbate the struggle for those affected. A recent study found over 80% of women who suffered HG reported their most harrowing life experiences, marked by profound morbidity and a severe impact on their quality of life; loss of income, social isolation, inability to care for self or others, feeling disconnected from their unborn child, mental health struggles, financial strain and the grief and frustration of not being able to participate in normal activities, even depression, anxiety and suicidal ideation. Those who reported their careproviders as uncaring or unaware of the severity of their symptoms were twice as likely to report depression and anxiety (HER Foundation). I often felt resentful and angry that I could not 'do life' like other pregnant women. I was barely able to eat and vomiting up to 10 times a day, yet when I spoke to others the advice was often to eat ginger and to try going for a walk and get some fresh air. Strong feelings like shame, grief, resentment, and isolation are exacerbated by the well-intentioned yet often misguided advice from those who fail to grasp the severity of HG.
When HG is left untreated, it poses serious health risks including; severe dehydration due to persistent vomiting, leading to dangerous electrolyte imbalances and essential nutrient deficiencies that jeopardize both maternal and fetal health. The relentless nature of this condition can cause significant weight loss and malnourishment, increasing the risk of birth defects. Furthermore, untreated HG can lead to metabolic imbalances such as ketoacidosis and hypokalemic metabolic alkalosis, alongside the risk of esophageal tears and dental damage from continuous vomiting. Alarmingly, there is an association between HG and an increased risk of preeclampsia, a condition marked by high blood pressure that can have dire consequences if left unchecked. The culmination of these challenges not only threatens the immediate health of the mother and baby but also raises the risk of long-term developmental issues for the child, including low birth weight, premature birth and variations in brain structure. Addressing and treating HG early is imperative to mitigate these significant health risks and safeguard the wellbeing of both mother and child.
It is not just about the consequences in pregnancy, as many HG sufferers continue to face the consequences of HG through postpartum and beyond. If symptoms were severe and prolonged, it can take years to heal- physically, mentally, emotionally.
The societal expectation for women to silently endure pregnancy-related issues exacerbates their plight, deepening the sense of isolation and misunderstanding. A shift towards greater empathy and understanding among healthcare providers is essential for addressing the complex web of medical and emotional challenges posed by HG. We are in desperate need of a more compassionate and holistic healthcare system.
The Consequences of Arbitrary Definitions of HG
One of the primary issues surrounding HG lies in the arbitrary definitions, uncertain origins, and varied approaches to its management within the medical community. The lack of consensus often results in conflicting attitudes and beliefs among healthcare professionals, leading to a wide spectrum of care standards and treatment strategies. An Australian study found that 1 in 4 women suffering HG were denied medication for treatment even encountering rejection by pharmacists, suggesting that obstacles to accessing medication primarily stemmed from a lack of knowledge about treatment guidelines and negative assessments of the risks versus benefits. Consequently, the woman's overall experience of the condition becomes profoundly impacted, with potential distress exacerbated. I have heard stories of women who were refused medication due to fears it was unsafe for the baby, however, offered "therapeutic abortions". Yes, you read that right. Instead of providing women with adequate treatment options to survive a HG pregnancy, in fear of sabotaging the baby's health and safety, they were offered to terminate them instead. #makeitmakesense and for what it's worth, I was even offered an abortion in both of my pregnancies before further treatment for the condition was considered.
Notably, over 50% of women with HG consider terminating the pregnancy, and 15.2% terminate at least one HG pregnancy. Other women have shared with me that they arrived at the hospital in desperation for some kind of treatment, only to be told it was just morning sickness and it would disappear by the second trimester, leaving with nothing but a script for Maxolon (a not-so-very effective antinausea medication). This dangerous cocktail of dismissive attitudes, inadequate treatment options, and the sheer physical and emotional toll of HG can push women to the brink. We need a radical overhaul of how we approach and treat HG in the medical community and it's time to start taking women's pain and experiences seriously.
Chante Campbell Morrison @wild.and.feathered suffering
during pregnancy with hyperemesis gravidarum & ptyalism
(excessive production of saliva)
Mental Health & HG
By now I hope you can see that HG isn't just some minor inconvenience during pregnancy—it's a ticking time bomb. Recent research by Nana (2021) has slapped us with a brutal reality check: a staggering 32% of HG patients have contemplated suicide because of the sheer hell they endure, coupled with the abysmal care they receive. Let that sink in. Thirty-two percent. That's a third of women battling HG pushed to the brink of despair - and we have seen this recently in Australia. Furthermore, up to 20% of women experiencing HG will develop Post-Traumatic Stress Disorder (PTSD), while many others may exhibit symptoms of trauma without meeting the full criteria for PTSD. It's typical for women to seek explanations regarding HG and experience emotional distress when discussing or recalling their pregnancy for years afterward (HER Foundation). These statistics paint a grim picture of the urgent need for better understanding, support, and medical interventions to address the short term and long term challenges faced by HG sufferers.
Mothers who suffered HG then face new motherhood under the shadow of trauma or other health complications, impacting future family planning and so much more. These challenges are compounded by existing in systems ill-equipped to support them, navigating the isolating journey of motherhood with the societal expectation to work like they don't have children and raise children like they don't work, all while carrying the costs of HG on their health and wellbeing. That's the thing about HG, it's not just about the pregnancy, it's also about the long term implications for mothers and families.
What We Know About HG in 2024
In a groundbreaking study with findings released in 2023, researchers meticulously compared the genetic profiles of women with HG pregnancies to women who experienced normal levels of nausea and vomiting during pregnancy. Remarkably, only one gene stood out significantly: the gene responsible for encoding a cellular stress hormone known as GDF15. The woman behind this discovery is Dr. Marlena Fejzo, whose own tragic loss due to HG in 1999 sparked her relentless pursuit of answers, and has been at the forefront of this research. The identification of GDF15 as a key player in HG opens new avenues for targeted therapies and interventions. Understanding the role of this cellular stress hormone paves the way for tailored treatments aimed at alleviating the severe symptoms and complications associated with HG - proof it's not all in your head. Moreover, this breakthrough highlights the importance of research and advocacy in perinatal health (HER Foundation). Of course, it takes a woman with lived experience to relentlessly pursue answers, and sure enough, she found them.
The People Making A Difference
The HER Foundation stands as the foremost global network of individuals who have survived HG and experts in the field, serving as the primary online resource for HG-related information. Established in 2002 by Kimber Wakefield MacGibbon, Ann Marie King, and Jeremy King, it has grown to become the largest grassroots organisation dedicated to HG. From tireless advocates to dedicated healthcare professionals, they are the driving force behind groundbreaking research, invaluable support networks, and life-changing resources for women battling HG.
Caitlin Kay-Smith founder of Hyperemesis Australia has spearheaded recent collaborative efforts with NSW Health to develop standardised HG Treatment/Care Guidelines, providing women with the option to receive in-home treatment, a monumental step forward in improving care accessibility and patient outcomes. Caitlin is working to revolutionise HG care throughout all of Australia.
It's time to shatter the internalised beliefs about women and pain. Hyperemesis gravidarum (HG) isn't just "morning sickness" or a mere inconvenience—it's a debilitating condition that can wreak havoc on a woman's physical and mental health and wounds families. It's time to recognise HG for what it truly is: a serious medical condition that demands urgent attention and comprehensive care during pregnancy and after. We can make a difference just by talking about this.
To all the courageous women and their families who have faced the brutality of hyperemesis gravidarum, remember that you are not alone, you are survivors, and you matter. I see you.
Hyperemesis information and support:
Australia https://www.hyperemesisaustralia.org.au/
Global https://www.hyperemesis.org/
Perinatal Mental Health support:
postpartum.net (global)
Check out my podcast Can We Talk About This? where I tackle taboo topics, expose biases and share lived experiences surrounding motherhood and women's health. You can find episodes on HG there too! Available on all podcast platforms: https://podcasts.apple.com/au/podcast/can-we-talk-about-this/id1572162194
References:
- el-Mallakh, R. S., Liebowitz, N. R., & Hale, M. S. (1990). Hyperemesis gravidarum as conversion disorder. Journal of Nervous and Mental Disease, 178(10), 655–659. https://doi.org/10.1097/00005053-199010000-00007
-King's College London. (n.d.). Women terminate wanted pregnancies due to hyperemesis gravidarum. https://www.kcl.ac.uk/news/women-terminate-wanted-pregnancies-due-to-hyperemesis-gravidarum
-Havnen GC, Truong MB, Do MH, Heitmann K, Holst L, Nordeng H. Women's perspectives on the management and consequences of hyperemesis gravidarum - a descriptive interview study. Scand J Prim Health Care. 2019 Mar;37(1):30-40. doi: 10.1080/02813432.2019.1569424. Epub 2019 Mar 1. Erratum in: Scand J Prim Health Care. 2019 Mar;37(1):141. PMID: 30822254; PMCID: PMC6454401.
- Hyperemesis Education & Research Foundation. (n.d.). Post-traumatic stress disorder. Hyperemesis Education & Research Foundation. https://www.hyperemesis.org/about-hyperemesis-gravidarum/recovery/post-traumatic-stress-disorder/#:~:text=Nearly%2020%25%20of%20women%20with,pregnancy%20for%20many%20years%20afterwards.
- Nana M, Tydeman F, Bevan G, et al. Termination of wanted pregnancy and suicidal ideation in hyperemesis gravidarum: A mixed methods study. Obstetric Medicine. 2022;15(3):180-184. doi:10.1177/1753495X211040926
- Peeling JL, Muzio MR. Conversion Disorder. [Updated 2023 May 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK551567/
- Simpson SW, Goodwin TM, Robins SB, Rizzo AA, Howes RA, Buckwalter DK, Buckwalter JG. Psychological factors and hyperemesis gravidarum. J Womens Health Gend Based Med. 2001 Jun;10(5):471-7. doi: 10.1089/152460901300233948. PMID: 11445046.
-Wang H, Rolls ET, Du X, Du J, Yang D, Li J, Li F, Cheng W, Feng J. Severe nausea and vomiting in pregnancy: psychiatric and cognitive problems and brain structure in children. BMC Med. 2020 Sep 1;18(1):228. doi: 10.1186/s12916-020-01701-y. PMID: 32867775; PMCID: PMC7460800.
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