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Living with Hyperemesis Gravidarum

hyperemesis gravidarum

Some of you may know by now that for the past 6 months I’ve been battling with Hyperemesis Gravidarum, or HG. It’s a very uncommon pregnancy-related disease and I’ve since become very passionate about spreading awareness for it. It’s one of the most under-reported and misunderstood diseases around, and since it is incredibly debilitating and life threatening, it’s really important to me that I do what I can to get the message out there. Underneath the surface of all of out joy for this most wanted pregnancy, lurks this horrible condition. Here is the story I share with many women who have HG and are silenced by lack of understanding – thank you for taking the time to read this rather long post:

I’ve had HG since before I even realised I was pregnant. For about a week before I found out we were expecting, I’d been sick in bed with what I thought was a really bad bug. How I wish it was just a bug… My and Tim’s extreme happiness in finding out I was pregnant was quickly marred by the diagnosis in the ER, after 48 hours of straight vomiting, that I had HG.

HG is one of the rarest pregnancy related diseases – yes, the same one that Kate Middleton had – and is severely under-reported, misunderstood by even medical professionals and has only recently begun to be studied in detail. I certainly didn’t know anything about it or how serious it was until it happened to me. Like most people, I assumed that Kate was being ridiculous and was being treated ‘like a princess’ for what was obviously just morning sickness. HG IS NOT MORNING SICKNESS. Not even someone of Kate’s stature could bring adequate awareness to what this is, which is very frightening – it just means people aren’t listening. The truth is, women, myself included, who do have to go through this are treated like they’re being ridiculous and that they’re over-exaggerating normal morning sickness symptoms. Because of this, they are often refused treatment, are told it’s all psychosomatic and we should just ‘get over it’ or ‘pull our shit together’. This is why it so badly needs awareness:

WHAT HG IS:

  •  A very real, very rare and extremely dangerous condition that is (thought to be) genetic and caused by elevated levels of HCG hormone from the embryo. Normal amounts of HCG lead to the terror that is the usual morning sickness affecting around 70-80% of early pregnancies. Excessive amounts of HCG are utterly debilitating and can be fatal for both mom and baby. There is currently no real known cause or cure. It is still currently one of the leading causes of maternal death.
  • Affects only 0.5% – 2% of pregnant women worldwide. 10% of that total choose to terminate well into their pregnancies because either they or the baby are in danger, or they can no longer cope or have lost all hope of overcoming HG. This includes women who have undergone years of IVF, miscarriage or infertility only to finally have a successful pregnancy with HG, leading to termination. Terminating a wanted, planned, beloved baby is not the same as aborting because you’re not ready, or you’ve changed your mind (and I am pro-choice by the way. Your body, your right to choose). Medical termination is not really a choice and the effects of this are unimaginable.
  • Includes 24/7 relentless nausea, vomiting in excess of 40 times a day (every few minutes), vomiting blood and bile, extreme weight loss (with a minimum of 5% of pre-pregnancy weight), malnutrition, inability to eat or drink anything at all, severe dehydration, starvation, electrolyte imbalance, metabolic reactions and symptoms, constant physical pain and psychological stress including depression, anxiety, panic and PTSD. Even a sip of water – the one thing all HG women would kill for – is impossible. Literally nothing stays down, no matter how much we are starving.
  • A harsh, dangerous environment for a developing baby to grow in, that has seen millions of precious, wanted babies not make it to full term. Those that do make it to term are at risk for a host of birth defects, including heart and brain deformities, spina bifida, cleft palate, brain damage, low birth weight, prematurity, neurodevelopment delay, jaundice, vitamin deficiencies, etc. Prenatal vitamins often make us feel worse and all of this leaves the mom riddled with fear and guilt for her growing child every waking second.
  • Renders the woman unable to go to work (I have been off work since April, since my lovely employers have refused to accommodate my health requirements and I’ve essentially lost my job). The risk of job loss internationally is extremely high and so the financial burden has to fall onto others which only adds to feelings of guilt and helplessness. HG leaves her immobilised and unable to fulfill ordinary tasks or look after herself including bathing unassisted, walking, driving, eating, moving, talking, etc. Everything becomes impossible and physically painful without help.
  • HG requires frequent hospital stays and ER visits for rehydration. I have been hospitalised twice so far, once for over two weeks, for HG related dehydration and starvation. Mental health therapies are also needed to deal with the constant worry and accompanying depression, anxiety and PTSD (fears include financial implications of job loss and medical costs, fears over the health of the baby, fears of helplessness, etc). Depression symptoms are alleviated when HG symptoms disappear, not the other way around.
  • Medications are chemo-grade anti-emetics that rarely work, are exorbitantly expensive (mine are cheaper generics that go for R1 000 per box), are not covered by medical aid and come with their own horrific side effects. There is no one-size-fits-all approach to medications for HG, so moms have to try one after another to find the one that works even if they’re extremely bad for you (one medicine I took left me with temporary partial paralysis). Don’t judge us for taking medicine during pregnancy – this is a life or death situation. So far they’re our only option until further research is done.
  • Leaves the woman feeling horrific guilt. Guilt for what this illness and the medication is doing to the baby, guilt for the unthinkable strain on her relationships and family, guilt for all the vomit and the crying and the messy house and the depression and leaving everything to her partner, and guilt for considering termination as a means of escape when it’s the last thing you’d ever want to do… Endless guilt.
  • Unlike morning sickness that, while horrible for every mom, lasts only the first trimester and doesn’t render the mother unable to lead a normal life. HG lasts for the full 9 months (even past delivery in some cases) with days of feeling better later on in pregnancy only to be followed by severe and devastating relapse.
  • Most doctors, unless they’ve experienced it themselves, consider HG as something temporary, fixable and ‘not that bad’. There isn’t enough concrete data to fully understand how HG works and how to effectively treat mothers who have it, so these women are left feeling isolated, misunderstood and without necessary treatment.

Hyperemesis

WHAT HG ISN’T:

  • Morning sickness. It’s nothing like it and is too often inaccurately called ‘severe morning sickness’. It’s not, though we wish it was. It simply shares the traits of nausea and vomiting, except they’re utterly incomparable in severity and danger.
  • A mental state.
  • A choice.
  • Weakness.
  • A normal pregnancy.
  • Over-exaggerating normal morning sickness symptoms.
  • The kind of nausea you think you know. This is so, so much worse and I’ve suffered from normal nausea every day of my life. Vomiting once or twice is always a horrible experience and is usually a kind of relief from nausea. Vomiting over 40 times a day, everyday, for months on end without relief from nausea is unthinkable and starts to do things to your vulnerable mind that are impossible to explain. You become extremely dehydrated and delirious and are unable to adequately care for yourself.
  • Something that can be overcome with positive thinking, ginger, crackers, peppermint or rest. Believe us, whatever remedy you think we should try to ‘fix this’, we’ve tried a million times already. Nothing other than birth can fix HG.
  • Caused by any previous lifestyle choices, health status or mental health.
  • Anyone’s fault.

WHAT NOT TO SAY TO HG SUFFERERS:

I have heard such terrible things thrown my way these past 6 months, not because people are terrible, but because they simply lack the understanding to know better. Things like ‘it’s just morning sickness, every mom goes through this’, ‘mothers are supposed to be stronger than this’, or ‘enjoy your hotel stay’ while in hospital connected to a hundred tubes and unable to drink a sip of water without vomiting. Things like ‘have you tried ginger?’, ‘you’re so lucky, you don’t even look pregnant’, ‘I wish I didn’t have to work’, ‘sleep it off’, ‘this is nature’, ‘you have to suck it up in the real world’, ‘pull your shit together’, ‘your baby needs you to be stronger than this’, ‘you can’t terminate, because your baby didn’t choose to be conceived’, ‘be more selfless’, ‘you should have known pregnancy would be hard‘ – from strangers, beloved friends, family and trusted medical professionals alike. It’s the most isolating, desolate place in the world, feeling not believed or judged for your choices when faced with something like this. Oh and this is a big one: We know you mean well, but telling us that we’re lucky that we’re thin during our pregnancy is not a compliment. It’s only evidence of how much trauma our bodies are going through and that is not a victory. Surviving is the victory, irrespective of your weight.

hyperemesis

HG women and their babies who make it to full term are called ‘Survivors’ for a reason. I am one of the lucky ones – so far, my baby is totally healthy and growing just fine, I have love and support from friends and family and an amazingly supportive and understanding husband who has taken on the role of fulltime carer to me on top of working 15 hour days, and I have access to medicine and health care as needed. My severity level of HG is classified as moderate, as it’s continued past half way through pregnancy with no signs of stopping. But there are so many more moms out there who will continue to struggle with inadequate health care, lack of information, poor support from family, other kids to care for, few resources and a much higher severity level.

There are currently NO support groups in SA (though I am part of an amazing international support group on Facebook) and there is just not enough of an understanding of the real consequences of 9 full months of constant, CONSTANT vomiting and illness. So far I have been in bed for 6 straight months, unable to go to work, look after myself or live a normal life. I have lost dear friends who can’t understand what I am going through and have judged me harshly. I have broken a tooth from overexposure to stomach acids, torn two muscles in my diaphragm, burst capillaries in my eyes and ruptured my esophageal lining so that I throw up blood – all from the force of vomiting, as well as debilitating anxiety and depression. I’m even starting to see signs of relief every now and then with good days and bad days. Many HG moms have it far worse and won’t make it.

That’s why I am determined, when I am better and I have overcome this, to raise awareness for this disease – this rather long post is just my little way of starting that chapter in the only way I can right now. The sheer lack of understanding makes it so much worse for HG moms because they’re left feeling isolated, alone and disbelieved. HG is life threatening – with enough awareness, there will hopefully enough of a push for funding and research and safe, effective medicines, which will in turn hopefully prevent HG from being life threatening in future. Because it’s pregnancy, everyone thinks they’re entitled to an opinion. If this were something like ALS, MS or cancer, no one would dare argue about the severity or the dangers of the disease, because there is enough awareness around those kinds of diseases to know just how horrific they are without having to have experienced it yourself. HG needs the same awareness.

If you or someone you know is experiencing HG, please do get in touch. It’s through sharing, honesty and vulnerability that you can get through it. The amazing support group I am part of is here: Hyperemesis Gravidarum Sufferers, Survivors and Supports These unbelievably selfless, strong women are all my heroes. You will need to apply to join the group.

There is also a brilliant foundation, the only one like it so far, dedicated to international HG research, awareness and funding with an incredibly detailed and frequently updated website. It’s become the ultimate resource for HG sufferers and their loved ones to understand this horrible disease: The HER Foundation

For further reading and understanding:
theconversation.com/when-nausea-from-pregnancy-is-life-threatening/
scarymommy.com/hyperemesis-gravidarum-makes-pregnancy-absolute-hell/
youtube.com/Hyperemesis-Gravidarum-10-Things-Not-To-Say

A LAST WORD…

hyperemesis

Now, 6 months later with my rather small baby bump, I couldn’t be more grateful for HG – it has made me more patient, more humble and, I hope, a better mom. I am still fighting and trying to survive, but I have a renewed purpose in my life – to keep raising awareness. But I wouldn’t have got to the point where I can even stand to write this without some very important folk: To the wonderfully strong people who have stood by me through this HG journey so far, my mom, my family, friends and loved ones who have dealt with all day and all night calls, texts, ER trips, hospital visits, cooking for Tim and dropping off food – I can’t begin to thank you enough. You are my heart ♥ To those who have judged me for my strange decisions or decided to no longer be in my life because this was all just too much for you, I forgive you and I understand. And to Tim – there are no words to describe how lucky I am, how grateful and amazed I am by your strength, your character, your love and your support. For waking up at 4am every time to help me to the bathroom to puke, for listening to me moan and complain and fuss and retch, for coming home after work and mopping up all the vomit, for driving me to and from the hospital over and over again, for holding me while I cry, for standing in the shower freezing your butt off to help me stand, for washing my hair and helping me brush my teeth, for the millions of cups of tea I don’t drink, for the food I can’t eat but you prepare anyway, for cooking and cleaning and taking care of the dogs. There’s just no way I could do this – or just do life – without you. Our baby and I love you more than anything and you’re already the best daddy in the world. Thank you ♥

Images: Her Foundation, Stock Photos, Facebook Support Group

One thought on “Living with Hyperemesis Gravidarum

  1. Louise

    This is the first time i came across your blog, and after delighting over a few recipes & DYIs, I found this post.
    I absolutely applaud your mission in increasing awareness for this condition – I have not gone through it, but know someone who did, and it was heartbreaking see her go through this, feeling helpless that so little could be done to help at the time.
    All of the best x

    Reply

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