I lay alone in bed, tying the minutes together with deep, shuddering breaths, playing my favourite songs to myself in my head, note by note, lyric by lyric. They were the only two things I could do; I couldn’t move, eat, drink, look at my phone or the TV; most days I couldn’t even bring myself to speak. In 21 days I lost a stone. It wasn't until my fourth month of pregnancy that I left the house for anything other than a medical appointment again.
That was what hyperemesis gravidarum, or HG, looked like for me.
Hyperemesis gravidarum is a classic example of an illness that most people don’t know how to pronounce, let alone know anything about (it’s hyper-em-uh-sis grav-uh-dare-um, by the way). I had heard of it once before, as the illness Kate Middleton suffered, but didn’t comprehend its severity until I’d experienced it first-hand.
Thankfully, we’re finally starting to understand more about not only what causes it, but how we can make it more bearable.
Kimber MacGibbon is a US-based registered nurse and the Executive Director and Co-Founder of the HER Foundation. The foundation campaigns for better awareness, support and research around hyperemesis gravidarum, and is the only organisation in the world to develop clinical HG resources and conduct genetic research on the HG. She’s worked with patients who suffer from the condition for 22 years and has twice experienced the condition herself.
“It is a miserable disease,” she says, “imagine having food poisoning for months on end without relief.”
“HG is a pregnancy disease which causes an inability to eat, drink, and function due to severe nausea and vomiting. Recent research has found that the greatest genetic risk factor is the presence of the gene GDF15. GDF15 codes for a hormone that is also called GDF15; this causes the symptoms of nausea, loss of appetite, weight loss and even taste aversions. The result is severe dehydration, malnutrition and stress on the body, which in turn increases the level of GDF15 hormones and makes a mother even sicker.”
So what's the difference between standard morning sickness and HG?
“Nausea and vomiting in pregnancy (NVP) ranges from mild, which is ‘morning sickness’, to severe, which is HG. All those who suffer from NVP deserve to be treated with compassion and respect by healthcare providers, employers, and family. However, while ‘morning sickness’ is extremely unpleasant, HG can be dangerous and even life-threatening for mother and baby. Mothers can develop hemorrhage or pre-eclampsia, go into preterm labor, and suffer from ruptured throats, severe dental damage; even organ damage,” she says.
Notably, some mothers who began their pregnancy with just moderate morning sickness will develop HG, but as Kimber stresses, this could often be avoided.
“Many healthcare professionals don’t take HG seriously enough until a mother is extremely ill, but many of the worst symptoms can be avoided with aggressive care, extra support, and time off from work and family responsibilities to rest and avoid what makes them sicker. This is why treating HG both quickly and effectively is critical.”
My pregnancy coincided with a UK Covid lockdown, so being admitted to hospital for treatment wasn’t offered, and I doubt I would have gone anyway - the thought of catching the virus simultaneously was unimaginable. My GP prescribed nothing but travel sickness tablets and ginger tea. They were about as effective as a Tigger plaster on a gunshot wound. It was weeks more until I was finally prescribed Ondanestron, a medication typically given to patients going through chemotherapy to stop them from being sick. It didn’t touch the persistent, crushing nausea. It did, however, ease the amount I was physically sick.
Kristina Arora, 35, from Leeds, is a mother of two. In her first pregnancy, in 2018, she estimates she was sick up to 30 times a day from the 8 week mark.
“My GP offered travel sickness tablets and pressure points bands for my wrists. Neither worked, and when I went back again for a urine test; I was sent to A&E straight away. I was put on a drip to get essential vitamins back into my body, prescribed some tablets and discharged. They didn’t help, so I was admitted again a week later, and prescribed Cyclizine Hydrochloride. Eventually I was vomiting 10 times a day, which sounds like a lot but by comparison was more manageable. By 3 months pregnant I’d lost over a stone in weight; I was at 6 months before I could manage without medication.”
Kristina felt that as well as her GP, her midwife was also dismissive. “I told her how low I was feeling and she brushed it off by saying that was just because I was being sick. But having sickness that severe, for that long, has more than a physical impact, it took a real toll on my mental health too. There weren’t any referrals made to people to talk to or groups to join, yet HG and pregnancy sickness are so common.”
Thankfully for Kristina, she was in the 20% of women who do not experience HG in their further pregnancies. For Felicity Hirst, however, the risk that she may fall into the 80% who do is too high. The 32-year-old, who lives in Newcastle and is currently pregnant with twins, has already decided with her partner that they will not try for further children due to the toll HG has taken on her. Like me, her symptoms began when she was 5 weeks pregnant; like Kristina, she was sick up to 30 times a day.
“I had to stay in complete darkness as even a light coming on would cause instant vomiting” she says. “For months every medical professional referred to it as ‘morning sickness’. I was admitted to hospital six times, lost 3.5 stone, and started throwing up stomach lining and blood. I later discovered that they were only giving me a type of anti-histamine to stop the sickness.”
Felicity was finally prescribed Xonvea after three months, and saw something of an improvement, but “with twice the amount of hormones running through my body, and two placentas, the sickness still occurs even now, just a few weeks before my due date. My partner and I have decided after this horrible illness that we will not have any more children,” she says.
Felicity eventually reached out to Pregnancy Sickness Support, who she says “armed me with the knowledge and ammunition to be firmer with my doctors.” She adds that in her darkest times she felt suicidal, and also contemplated terminating the pregnancy.
“Looking back now, that breaks my heart, but I was so depressed and isolated I can understand why I felt that way, and why anyone would feel that way.”
Contemplating suicide and abortion to make the misery end is something Kimber has seen in many of her patients over the years.
“This is especially true when they have inadequate social support and inadequate healthcare,” she says. Investing in HG care is not just essential, she adds, but a financially sound decision.
“The short-term costs of treating HG are much less than the cost to society when a mother is ill longer, and the medical costs for preventable complications arising which cause problems that may persist for years or even a lifetime,” Kimber explains.
On this side of the pond, NHS GP Dr Najia Shaikh says, “if a pregnant woman is being sick multiple times a day and/or is unable to keep food or drink down, they must tell their midwife, doctor or alternatively contact the hospital ASAP to be given the right treatments; this may include anti-sickness drugs, steroids, intravenous fluids and vitamins B6 and B12.”
HG is now in the past for myself and Kristina; we’re both incredibly grateful for the fact, and keen to make more people aware of the illness. Felicity still has odd days of sickness, though is focusing on the safe arrival of her twins; adorably, they’re due on Valentine’s Day.
“We decided to not find out their genders,” she says. “I can’t wait to find out who they will be.”
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