During my first pregnancy, I fully expected to glow and bloom. I was going to eat healthy, organic food, and exercise to nurture the life growing inside me. I never imagined that by week 10 I would look up the number for an abortion clinic from a bed where I had been a prisoner for two months, bar the days spent in hospital on a drip. I suffer from hyperemesis gravidarum and for me pregnancy is life threatening.
Hyperemesis is not just normal waves of nausea and occasional vomiting that most women experience in early pregnancy. It is nausea so intense and all-consuming you feel like you’ve been poisoned. It is vomiting so relentlessly that your throat bleeds and your stomach muscles tear. It is a sense of smell so powerful and warped that your partner can’t come near enough to offer comfort without making you retch. I could not swallow my own saliva without puking it back up.
The long, dark days lying motionless in my bed with acid trickling from my mouth slowly turned into weeks and then months. I was wracked with guilt for taking medication and at the same time I fantasised about miscarrying or aborting my baby.
But when I sought help from doctors or support from friends I was met with scepticism and doubt. People thought that ginger, fresh air and a positive mental attitude was all I needed. Some people thought I was skiving off work or that because they had never heard of it, hyperemesis couldn’t possibly be a real condition.
When my GP took me off the medications the hospital had prescribed, saying “It’s normal, pull yourself together”, we seriously considered termination. I had come so far but still had so far to go. My husband worried that I might die and he felt helpless. But even an abortion seemed impossible; I couldn’t get out of bed to shower, let alone manage long car journeys for multiple appointments.
Unsurprisingly, the mental toll of hyperemesis can be profound. And yet much of the mental burden and suffering could be avoided. The physical symptoms are torturous but it is the loneliness and stigma that is so hard to bear. When a doctor or midwife simply believes what you’re saying, the first battle is won and the fight to survive the illness feels more achievable. Is it too much to ask to be believed?
Historically, hyperemesis was taken very seriously as it was the leading cause of death in early pregnancy. Before intravenous fluids and anti-sickness medication, the only effective treatment was abortion, which was generally fatal anyway. The death rate dropped with modern treatments but then came the psychodynamic era. Suddenly women were being accused of mentally rejecting the foetus and were subjected to barbaric “therapies” such as isolation and interrogation.
Incredibly, this was the mainstay of treatment in Europe until earlier this century and, despite a vast amount of scientific evidence showing it is not a psychological condition, the psychodynamic theories persist in public and healthcare opinion. In part, they prevail because we don’t yet know the precise biological cause of either morning sickness or hyperemesis gravidarum.
The thalidomide tragedy of the 1950s also casts a long, dark shadow over the condition and is the key reason doctors are fearful to prescribe in pregnancy. There is no cure for hyperemesis. What we have is a range of safe medications to manage the physical symptoms. Decades of safety data has shown they don’t harm the baby; in fact recent research found that not treating severe symptoms can be harmful. The old adage that “Baby will be fine, it takes what it needs” is simply not true. The only solution is education and awareness, but doctors have to want to learn about hyperemesis and its treatments in the first place.
It’s not all doom and gloom – dedicated hyperemesis day units are springing up across the UK
I consider myself one of the lucky ones. I don’t know how we got through it but we did. The moment I gave birth to my son it felt as though a 70kg rucksack of nausea and misery I’d been carrying for nine months was lifted off my back; it was euphoric. Many women aren’t as lucky and face little choice but to terminate their wanted pregnancies as the physical, mental and financial toll becomes a reality. For some women, it is simply a matter of life or death.
Access to treatment has thankfully improved this decade, and the condition is once again being recognised as the life-threatening pregnancy complication it is. Yet the stigma remains tenacious. My research with Plymouth University, published by the Midwives Information and Resource Service this week, looked at women’s experiences of treatment for hyperemesis across the UK over the past two years and found that, for more than half of women, accessing treatment was difficult.
Women’s symptoms were often dismissed or normalised, or the treatments for them were described, incorrectly, as risky. A mere 34% of women felt they were making informed decisions about their treatment and couples terminated based on misinformation about other options. Healthcare professionals can’t give the information that women need to give informed consent if they don’t know the information themselves, so again, education and awareness is the key.
It’s not all doom and gloom – dedicated hyperemesis day units are springing up across the UK and could offer a solution to some of the challenges faced by those affected by hyperemesis. Staff knowledge and understanding, information provision and overall satisfaction was found to be higher in such settings. Treatment can be fitted around family, work and childcare commitments and the number of treatment days were halved thereby reducing financial burdens and saving a lot of money for overstretched maternity units. It is likely that the very process of setting up a day unit ensures staff are educated about hyperemesis.
Ultimately, however, the drugs are the same whether they are given in hospital, day unit or by a GP. It’s when they are administered with compassion, knowledge and informed consent that they can really make a difference.
For more information about hyperemesis gravidarum, its treatments and to get support for someone suffering, there is a UK charity called Pregnancy Sickness Support
Pregnancy sickness can kill – why are doctors so uninformed about it? | Caitlin Dean
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