‘Morning’ sickness has long been something we’re led to expect when it comes to carrying a baby. We’re told it’ll pass, to add ginger into our diets, to eat little and often. The message is mainly to ‘get on with it’. It’s part and parcel of bringing a baby into the world. But for some, their experiences of pregnancy sickness stretches far beyond a little bit of nausea in the morning. Hyperemesis gravidarum (HG), a condition brought to many people’s attention by Kate Middleton, is debilitating, devastating and, in many cases, deeply traumatic.
Defined as “a rare disorder characterised by severe and persistent nausea and vomiting during pregnancy that may necessitate hospitalisation,” people have suffered with HG for centuries, but in October, a survey of more than 5000 women was published in Obstetric Medicine, detailing the harrowing illness. The biggest survey ever completed on the condition, it revealed that 4.9% of those surveyed terminated a wanted pregnancy because of suffering from HG, while 52.1% had considered termination. 25.5% occasionally thought about suicide, while 6.6% regularly considered it. But these people are not just statistics. These are real people with real pregnancies. These people make up our community.
A bolt from the blue
Tuesday McEwan had HG in her third pregnancy. Having not experienced it in her previous two, it came like a bolt from the blue. The mental, emotional and physical toll the extreme sickness took was devastating: “I considered terminating my very wanted baby because I genuinely felt as though I couldn’t live another day through the nausea, sickness, and exhaustion.”
Tuesday’s sickness began in week four of her pregnancy. By week nine, she was admitted to hospital for severe dehydration and the onset of malnutrition. “After 48 hours of the doctors and midwives trying to rehydrate my very broken body, I was sent away with anti-sickness medications. I could not enter half of the rooms in my house as they would trigger nausea and sickness and this lasted for the entire pregnancy.”
“I felt like my entire life had ended. Minutes felt like hours and days felt like weeks when the only thing I had to focus on was the nausea and my severely heightened sense of smell.”
HG has left Tuesday with “crippling anxiety” and she credits it with playing a part in her post natal depression. “I can honestly say that Hyperemesis has ruined my mental health, and I know that I will never be the same person that I was before I fell pregnant.”
Tuesday is not alone. The mental health impact of Hyperemesis is massive and was also felt by Jessica Craner, a midwife and mother of one. “The mental impact [of HG] led me to considering abortion…My pregnancy was planned and wanted. I did not want to lose my baby but the desperation for relief was strong and relief meant not being pregnant anymore. I felt guilty for having these thoughts and this negatively impacted my mental health.”
Jessica’s intense nausea, vomiting (anything from 5-40 times a day), heightened sense of smell and dizziness was relentless: “There was no escape. I felt like I wanted to rip my throat out to stop the nausea. I felt desperate. I used to sit on an evening and tell my husband that I didn’t want to be alive anymore. I didn’t want to die but I didn’t want to be alive enduring the horrific nausea.”
But Jessica also battled with feelings of imposter syndrome. When her GP wrote ‘pregnancy sickness’ and not hyperemesis gravidarum on her sick note, she recalls feeling ‘weak’ and battled with her diagnosis throughout her pregnancy. Now, she understands that constant nausea which negatively affects women’s quality of life is hyperemesis and is campaigning with for more understanding around the condition.
“There is a huge lack of training on hyperemesis for health professionals. Whilst training to be a midwife I learnt from other midwives to tell women with hyperemesis to have ginger in their diet and that it would go by 12/16 weeks – which is incorrect. The research evidence shows ginger makes it worse and it can last all pregnancy. Women need specialist hyperemesis support to be able to improve their quality of life with the condition and ultimately save their lives and the lives of their babies.”
For Nazra Mustafa, experiencing HG was the darkest time of her life and one which caused her to question her faith. Her life came to an abrupt halt when she began being violently sick at 3-4 weeks pregnant and her “whole world was turned upside down”. Extreme nausea and vomiting caused a domino effect of other symptoms such as severe dehydration and malnutrition which led to other issues like fatigue, weakness of the limbs and weight loss. Nazra vomited so much, she damaged her oesophagus and HG left her bed bound for the first five months of her pregnancy. Nazra didn’t just feel the impact on her mental health but being confined to the house meant she was isolated from those around her too.
“I was disconnected from everyone. My social life, including seeing family, significantly reduced. I was unable to work throughout the pregnancy, resulting in me having to take early maternity leave. This impacted me and my husband both emotionally and financially. My relationship with my husband was impacted negatively, we couldn’t spend time together like we used to, he felt helpless and I was embarrassed of the state I was in when he was around.”
“My spiritual beliefs took a beating too. As a Muslim woman I have always believed that trials make you stronger, but this trial was so difficult, my thoughts became so negative and irrational that I began to question my beliefs. I had no quality of life and was wishing every single day away.”
Relief came for Nazra when she ended up in A&E and was diagnosed with HG by a doctor who understood the condition and told her it was not only safe to take the medication she was being prescribed but that if she didn’t both she and her baby would be at risk. Another “lucky break” came for Nazra when she was seen by a doctor who “checked in with me, listened to me and prescribed me medication that I needed with such consideration.”
Nazra added that she believes “many women are suffering [with HG] due to the caution taken by medical professionals” as they can be wary of prescribing anti-sickness medication in case it affects the baby.
Stefanie Sybens had IVF to conceive her baby and was devastated by the “dehumanising” experiences of hyperemesis gravidarum. She experienced vomiting 30+ times a day, dehydration, ketones, muscle waste, torn oesophagus, bruises and mental health issues from week five of her pregnancy and found herself totally disconnected from her pregnancy, her partner and those around her.
“Having HG impacted my whole life as I was admitted on several occasions, once I had to stay for a week as I only weighed 50kg that point. I wasn’t able to work or do anything as everything would be a trigger for me (movement, light, food, smells). I couldn’t connect to my pregnancy, even though it was very wanted as I went through fertility treatment, because I was just too sick. No one in my environment understood what I went through and brushed it off as morning sickness, but luckily the amazing hospital staff at St Thomas hospital told me how severe my condition was and did everything to help me. I was on Ondansetron (a medication they give to cancer patients) for the whole of my pregnancy because all other anti-sickness medication had failed me.”
Stefanie’s experiences gave her both pre and post natal anxiety and she can still recall details of her experience clearly: “I still think everyday about everything I went through. I can still feel how the hospital sheet felt, I can smell the burned toast in the hospital and I weigh myself compulsively because I am still so scared of losing weight.”
For Tuesday, Jessica, Nazra and Stefanie, even though the symptoms of HG may have stopped when their babies were born (as is most common), the impact of their experiences are long lasting and far reaching. Nazra explained “Hyperemesis Gravidarum doesn’t just take a woman down during the pregnancy, the trauma can have lifelong effects.”
But the study carried out in October is a huge step to helping people who experience HG and that work is continuing all the time.
Senior author of the study, Professor Catherine Williamson from King’s College London, said: “This study has confirmed the urgent need for further research into this devastating condition. We hope that the work we are currently carrying out at King’s College London will allow us to find out more about the effects that hyperemesis gravidarum has on both the mother and developing child and also about what causes this illness. By answering these questions, we will be able to develop more effective treatments, improving the care of these women.”
If you have been, or are currently, affected by Hyperemesis Gravidarum you can get in touch with Pregnancy Sickness Support via their website or helpline: www.pregnancysicknesssupport.org.uk / 024 7638 2020 (mon-fri 9am-5pm)