Here is your load, now bear it...
As you know, along with the wonderful Tony, I answer a lot of the Pregnancy Sickness Support helpline calls that come through from desperately ill women needing help, information and support. This week I had to have a really difficult conversation with a young woman who wants to be a mum and indeed is pregnant with a baby they have been trying for some months to conceive. The problem is she suffers from severe hyperemesis gravidarum, a condition which already lost her a baby a year ago when she had exhausted the treatment options obtainable without a fight. Sadly she didn't know about steroids at the time and she had no idea what the condition was she was battling, no support or information from healthcare professionals and she was scared.
Now at 4 weeks pregnant the nausea was starting again.
I think she had hoped that the helpline would provide information about a cure or reassure her that she wouldn't suffer this time, which, albeit as gently as possible, I basically crushed into smithereens. Hopes of IV at home rather than the day case re-hydration she had last time were crushed as I explained that most women consider IV's as a day case a significant improvement on admission and IV at home is rare across the UK.
As I went on I could feel the reality of the situation dawning on her... unfortunately you can't have a normal pregnancy like other women. Unfortunately you suffer a condition called hyperemesis gravidarum and if you want to be a mum you are going to have to battle this enormous beast.
What about work? Realistically you'll be signed off for sometime... good news is your employer can not discriminate, bad news is, many do regardless.
I tried to put it in perspective: Some couples can't conceive naturally and for them to have a baby they need to go through, potentially, multiple rounds of IVF. That's hugely expensive and very stressful. Some couples re-mortgage their homes to afford it or sell their cars or other assets. Other couples have problems with long term conditions prior to pregnancy which can make pregnancy a real battle, lupus and other auto-immune disorders, mental health conditions, physical disabilities and so on. You have hyperemesis gravidarum – that's your load to bear and although there is treatment and support which can make the road you are walking a little easier we can't lift the load from your shoulders – there is no cure and there is no short cut to the end.
Your partner can bear a little weight by helping to advocate for you, fighting for treatments and defending your honour, but they can't take it all for you. You must bear the bulk. The constant unrelenting nausea, the vomiting day and night. The long lonely hours. The warped smells and dripping saliva. The crushing pain of malnutrition and cracking feeling of dehydration. The bed sores on your hips and scars from IVs... they are yours alone to soldier through. Yours and your baby's. These will be you war wounds – there will be mental and physical scars from this battle, less if you get good treatment and start early medication but even then... you will never forget.
You want to be a mum? Here it is, this is your challenge. I'm not going to dress it up, I'm not going to bullshit you about it all being better at 12 weeks or easily fixed with a ginger-nut biscuit. I haven't got a quick fix or natural remedy. It is one of the hardest things you will ever go through and it will fundamentally change you as a person. But it is worth it, I promise. When you reach the other side you will have new knowledge and insight, you will have grown not only a baby but a new part of you, a badge of honour. An internal medal that says “I survived”.
Because you can survive this and it will end. Take it one day at a time. Take medication. Accept help. Seek support.
Here is the information you need to survive... here is the treatment plans and coping strategies... here is a volunteer to hold your hand... and here is the 2 tonne anvil of HG you have to climb up that mountain with. Your baby is at the top.
The “Risks” of Medication in Pregnancy
This week saw an episode of Call the Midwife in which a women who was suffering Hyperemesis Gravidarum was given a drug called Thalidomide. The programme is set in the 1960's and while the women suffering portrayed the horrors of hyperemesis very well, the miraculous cure of the drug was perhaps a little overstated... I don't think even Thalidomide had that much of a wondrous effect on full blown HG! Anyway, that's by the by... We all know the devastating effects Thalidomide caused when taken between days 35-50 of pregnancy. It must be historically one of the most Teratogenic drugs (a medication which causes abnormalities in a developing foetus) ever to have been given in pregnancy and it is thanks to this the danger of using treatments without proper analysis and adequate testing was exposed and no longer happens.
The damage Thalidomide caused for the victims at the time is well documented and the history and mechanisms of the drug are understood. There is thankfully support for the people affected by it although there is still a long way to go in getting compensation for everyone affected, particularly in some countries such as Ireland.
However, Thalidomide also, albeit indirectly, damaged another massive group of people and still does. Even today it's legacy results in massive foetal loss and significant morbidity for pregnant women suffering, not just hyperemesis gravidarum but a whole host of medical condition in pregnancy. It reduced illnesses and disease, even life-threatening ones, experienced in pregnancy into states which must be borne regardless of risk to mum and baby.
Fear is the problem. Fear and a lack of understanding of the risks of untreated hyperemesis gravidarum.
Much like the fear of many diseases which are vaccinated against has waned since our children no longer die of them, fear of HG has diminished since the introduction of IV fluids. It's now incredibly rare for women to die from HG, but if Call the Midwife was set in the 1920's the character would simply have died, end of storyline.
Thalidomide was given at a time when people didn't realise that things the mother ingested could have an impact on the foetus. In the same way that pregnant women were regularly x-rayed before we realised the x-rays harmed the foetus (EDIT: See comment below by Margaret O'Hara). And is was normal for women to smoke during pregnancy before we discovered the harm it causes. Eating too much liver can cause problems and regular alcohol consumption is harmful.
We've also discovered that a lot of things are absolutely fine in pregnancy: eating strawberries won't cause birth marks; raising your arms above your head doesn't cause the cord to wrap around the foetus's neck; it's okay to eat peanuts (unless you're allergic obviously)... and you know what? Lots of medications are just fine to take in pregnancy!!!
You see we discover new things all the time thanks to science and research. And ironically, it's thanks to Thalidomide that we now look into whether or not a medication is safe in pregnancy, animal studies are done and data is compiled ensuring detrimental effects would be rapidly picked up... this is the positive legacy of the drug that caused so much harm.
Now I'm not saying all medications are fine... there are a number of medications which are absolutely not okay and can increase the risk of abnormalities (Thalidomide being one of them, it's used to treat a number of conditions worldwide today). But just because one medication that was used for nausea and vomiting in pregnancy caused a problem doesn't mean that ALL anti-emetics cause harm.
What we need is information about the risks so that informed consent can be given for women to make choices. There is already a lot of information available about the common anti-emetics used, just because an individual doctor hasn't hear of it's use doesn't mean it's not common or there isn't evidence of it's safety.
In the last week alone I've had the following comments from women who called the Pregnancy Sickness Support helpline:
“In my last pregnancy, after I got out of hospital, my GP told me that the medication they gave me was harming my baby. He took it me off it. I haven't been to a doctor this time as I'm scared”
“My doctor told me nothing is safe to take”
“I asked about steroids but they said they carry too many risks... what are the risk exactly?”
All of these women were suffering shocking levels of morbidity including significant weight loss, dehydration and malnutrition from months of suffering extreme levels of vomiting and constant vomiting. They were all on the brink of depression, two were considering termination as their jobs and homes were at risk. One was beginning to experience relationship problems and all were experiencing high levels of stress.
You see women do not resort to taking medication in pregnancy lightly. In my, fairly extensive experience, I find women are willing to tolerate extreme levels of sickness, which if they were not pregnant would see them in hospital within 48 hours. Yet because they are pregnant it can be weeks, months or never even, that their doctor treats appropriately.
So lets look at the known risks to the foetus for the following medications:
Cyclizine and Promethazine (Avomine) are first line medications which have been around since the time of the Thalidomide disaster and are part of the same group of medications (H1 receptor antagonist antihistamines) which is the main ingredient in a drug licensed for pregnancy nausea and vomiting in the USA and Canada. There is no evidence they cause any harm to the growing foetus at any point in pregnancy and there is lots of evidence that they do not cause any harm.
The next line of medication is metoclopramide, Prochlorperazine (Stemetil or Buccastem), and domperidone (motilium). Again, these medications have been used since the time of Thalidomide without any evidence of harm caused to the foetus and plenty of evidence that no harm is caused.
Ondansetron (Zofran) has been around for 17 years now so can't really be described as “new and unknown” anymore. Trials of high doses in pregnant animals has shown no problems in the foetus's and a study of over 600,000 pregnancies in Denmark found that ondansetron during pregnancy was not associated with a significantly increased risk of birth defects. Despite strong evidence for it's safety I have recently noticed a number of law firms are looking to make some money claiming ondansetron is associated with an increased risk of heart defects. Ironically, in the long term such a law suit could have the opposite effect and result in the drug being licensed if it's found not to cause any harm.
Finally, the current last line of treatment available in the UK is steroids. Steroids are frequently refused for women with hyperemesis and many women are made to feel ashamed for even asking about them. “Goodness no way! Steroids will harm your baby, why would you want to risk your baby?” was a recent comment one woman received.
Steroids are regularly prescribed in pregnancy for the following conditions, to name but a few:
- Rheumatoid arthritis
- Ulcerative Colitis
- Crohn's disease
- Recurrent miscarriage
Interestingly, women discussing taking steroids for those conditions on online forums talk about how their doctor “persuaded them it was safe” and “explained the risks verses benefits” and “said there were no known risks”. Overwhelmingly the doctors are reassuring about their use. Yet women on hyperemesis forums report “my doctor refused steroids and said my only option is termination” or “I asked about steroids but he said they aren't safe”.
So what are the risks? Well, a few studies have shown a possible increased risk of cleft palette if taken early in pregnancy. By increased risk we are talking an increase from 1 in 700 to 1.3 in 700. More recent studies, such as this one from Denmark, which looked at 51,973 pregnancies in which the mother took steroids in the first trimester and found no increased risk. And while we're talking about cleft palette risk it is worth noting that mothers exposed to highly stressful situations in early pregnancy also carry the same increased risk of cleft palette. Other risks are to do with longer term use throughout the pregnancy, such as gestational diabetes and small for dates baby, both of which are a small risk than the risks associated with untreated hyperemesis in the second and third trimester.
Interestingly the dose required for HG management is generally much less than for those other conditions mentioned above.
So why the difference? Is it ignorance? Prejudice? Fear?
Well it boils down to belief in the condition really doesn't it... the conditions mentioned above are all “real” and exist outside of pregnancy, where are HG is caused by pregnancy and therefore is just a “hormonal woman making a fuss” or something along those lines.
The bit I really don't get is why so many doctors seem to throw the evidence base out of the window as soon a women is pregnant?
Why is it okay to just make stuff up about supposed risks instead of having a look at the evidence?
Since when was termination “safer” for the foetus than taking a medication with a possible tiny increased risk of cleft palette?
These are all questions I'm unfortunately unable to answer, but if you are a healthcare professional who would prefer your patient terminated a wanted baby rather than give her a safe and effective medication perhaps you could explain to me why? Is is fear from the Thalidomide disaster? Is it because you don't think she's really that ill? Is it lack of time to look up the evidence? To be fair it's not hard... it's not like you have to drive to a medical library and trawl through the literature... the information is at your fingertips.
The saddest thing about the episode of Call the Midwife on Sunday was how little we have moved on in terms of treatment and understanding of HG since the 1960's. Women still meet midwives who tell them to “put mind over matter and suck a polo mint” while they are rapidly getting more and more dehydrated. Women are still left until the point of collapse, until their oesophagus is torn to shreds, blood vessels in their face burst, hips covered in bedsores and emaciated bodies too weak to stand. The difference now is that instead of looking at the treatments available and their evidence base for safety and efficiency women are denied them. If that storyline had been set today the character would have been encouraged to terminate the baby, especially given the social situation she was in.
Doctors in the 1960's had to prescribe medication with no knowledge of it's risks, no evidence base behind it. But they don't have to do that now... there is plenty of information widely available, they just have to access it.
I've rather waffled on with this post now... but my point is that Thalidomide did enough damage back in the 60's and I'm sure for those affected it still causes unimaginable misery and frustration that it was ever allowed to happen – but enough is enough. We have to stop letting the legacy of Thalidomide continue to cause harm to mothers and babies. From thousands of foetal deaths to lifelong maternal health complications due to untreated HG, the legacy of fear is rife. They aren't asking for a cure for morning sickness... they are asking for safe treatment for a life threatening complication of pregnancy.
For support, information and full references please refer to the Pregnancy Sickness Support website.
All treatments are also fully discussed in my book Hyperemesis Gravidarum - The Definitive Guide:
The importance of awards for raising awareness
At the risk of sounding like I'm just trying to big myself up and win stuff... there really is a good reason for voting for me. Getting the subject of hyperemesis gravidarum into the public eye is vital! By the HG community speaking up in the form of votes, nominations, completing surveys and so on makes everyone else realise it's a subject worth talking about.
By making it clear how much you appreciate the support available is to you it demonstrates how needed they are. And they are needed because HG is truly awful.
If I was writing about morning sickness, or how irritating having a bit of a headache is or some other mild thing which doesn't really cause much discomfort then I wouldn't have a great big following and women wouldn't feel inclined to nominate or vote for me. They do it because I'm writing about a subject with a massive impact. They do it because what I write and how I represent the subject makes them feel understood, less alone and more supported.
But that's only because HG makes them feel so misunderstood, alone and unsupported! If HG was a condition which was well managed, received great empathy and women were supported in great cradles of understanding and kindness then again my blog, the support network and helpline would all be rather redundant.
So make the world realise how valuable a voice representing the condition is. Tell people how much you appreciate there being a support network and some bonkers woman who writes endlessly about spewing up. With all your voices back up my writing it has a much bigger impact and is harder to ignore... make your voice count!
It's the time of year when various awards are receiving nominations. Last year for the first time ever I was nominated for a number of awards including the MAD Blog Awards, the BIB Awards and even Tesco Mum of the Year Awards. I didn't actually win any of them but being nominated and shortlisted was incredible! On top of that some of these awards come with monetary prizes for our charity. This year I have been shortlisted for Britain's Best Volunteer by the Small Charities Coalition and Markel Group. To win I need votes and you can click the link below to vote for me and if I win then I get a whopping £1,250 pound to donate to PSS!
In the next few weeks nominations will open for the MAD Blog Awards and the BIBs so please consider nominating my blog in those ones also. And if you happen to see any other awards that either myself, Pregnancy Sickness Support, the HER Foundation, Pregnancy & Medicine Initiative or anyone else involved in the Hyperemesis Improvement Movement could be nominated for then please go for it! It's a really positive way that you too can contribute to the movement, raise awareness and make a difference for our daughters. It's a useful tool for gaining local and national publicity and it's also really nice for those of us working so hard for HG sufferers to get recognised.
Finally, a reminder that you can also make your voice count by filling in my surveys. The termination survey will be open for a few more days and if you have been through the pain of terminating a wanted pregnancy because of hyperemesis it's vital that you make your voice count. I will be publishing the results with bpas who want to collaborate to reduce termination of wanted pregnancy and increase women's access to good, evidence-based treatment for HG. The survey is totally anonymous.
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.
About this blog
Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.
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