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5 Ways You Can Make a Difference Nothing Is Too Small Hyperemesis Gravidarum

Hyperemesis Gravidarum – 5 Ways You Can Make a Difference

This time last year, my life was overtaken by Hyperemesis – and I wasn’t even pregnant!

News of the Duchess of Cambridge’s second pregnancy meant that there was an increased interest in the condition, and I raced down to London at extremely short notice for an interview on Good Morning Britain. On top of that, our book was nearing its publication date, so we were full steam ahead on last minute prep. And all of this around my usual work for Pregnancy Sickness Support (PSS).

I began to feel swamped, big time, and it only got worse. It is very difficult to describe the effect it all had on me, because quite frankly last Autumn almost broke me and it’s something I would like to forget in many ways. But the reality is, I don’t think I’ll ever stop caring about the cause and that means finding new ways of doing this.

The past few months have given me some space and time to figure out where I fit in the HG Community, and the truth is I’m not quite sure I do any more. But that doesn’t mean that I cannot support the cause, simply that I am no longer an active part of it.

Hyperemesis Gravidarum – The Definitive Guide will continue to help current sufferers and survivors, because the hours of work put into it are now paying off. And the posts on my blog, written over the past 4 years, still continue to get hits from web searches regarding Hyperemesis. Even when I am not actively writing about it, I am still able to spread the word. And that has been the biggest lesson for me this year – you don’t have to be on the front line to make a difference.

I also know that there are so many people out there with a wealth of skills and experiences that can be put to good use in improving the care, support and treatment of women with Hyperemesis, if only they knew how. So, with that in mind, I thought I’d put together a list of 5 ways you can make a difference.

5 Ways You Can Make a Difference Nothing Is Too Small Hyperemesis Gravidarum

1. If you feel like you can offer one-to-one peer support to another woman suffering from Hyperemesis, do register as a volunteer with PSS. This isn’t for everybody, I know – sometimes the trauma from your own pregnancy is too great to support another, and sometimes you’re so busy balancing work and home life that being available to support is just too much pressure. However, for those who do feel able to give support via phone, text or email, it can be a thoroughly rewarding role.

2. Share your experience, to raise awareness. I know this isn’t always easy, and it can often lead to difficult responses from friends and strangers alike who just don’t get it, but the best way to create change is to first create awareness of the need for change. Write about it on your blog, or contact a blogger you know and ask if you can write a guest post for them. Share a video on youtube, or write to your local newspaper and radio station asking if they might interview you. If you’re happy to talk to the national press, join a group set up for that – just be sure that you trust the journalist and/or editor not to put an unpleasant “spin” on the piece.

3. If you don’t feel comfortable writing or sharing your own story, why not share those that others have written. It’s so easy with so many social media platforms available at your fingertips… simply search for specific terms such as ‘Hyperemesis’, ‘HG’ and even ‘Morning Sickness’ (yes, I know it isn’t morning sickness, but you’d be amazed at how many articles you will find about Hyperemesis that only come up when using that search term). Remember hashtags are used on many platforms and you can also sign up for Google Alerts to get articles straight to your inbox. Spreading the word about the reality of HG, the work that is being done to improve women’s experiences, and ways in which people can get involved is so important to creating and maintaining that change.

4. Donate some money or raise funds to help keep services running. You can do this via direct debit monthly payments, one-off fundraising events such as a coffee morning or a sports challenge, selling items on eBay and setting a percentage to go to charity, or even whilst doing your weekly shop by using one of the many fundraising apps such as Give As You Live. And don’t forget that if you are a UK tax payer, you can register for Gift Aid, meaning that the charity can claim a further 25% at no cost to you!

5. And finally, why not look at the skills you have and think about how they could be used to help the cause. I am a firm believer that everybody has something to give, you just have to figure out what that may be. Are you super-organised? Why not offer to help organise events! An experienced PA? What about offering to set up a group calendar that can be used to keep everybody up-to-date and plan ahead for social media campaigns around key events! Talking of social media, are you forever glued to your phone? Why not give a few hours a week to support specific campaigns! Accountants could help with book-keeping, and nurses could raise awareness with colleagues. Chefs could offer ideas of quick, easy, low odour meals and those in retail could offer advice on corporate sponsorship. The way your skills can be used are only limited by your own imagination – so how do you think you could help?

I’m sure there are so many more ways in which you can get involved and make a difference! But I hope that these five provide a place to begin. Whether you can offer 5 hours a week or 5 days a year, your help will make a difference – nothing is too small!

 

 

International Hyperemesis Gravidarum Awareness Day 15th May

Together We Can Achieve Great Things (Thoughts on International Hyperemesis Awareness Day)

International Hyperemesis Gravidarum Awareness Day 15th May

Today is International Hyperemesis Gravidarum (HG) Awareness Day, an event which will always hold a very special place in my heart. I may not write much about Hyperemesis any more, but it is something I will never forget. Over the past 3 years I have seen awareness of the condition grow, leading to greater support and better care for families affected by it, in a way that I could never have imagined when suffering from Hyperemesis myself in 2011. And that’s all because individual voices have come together to enact greater change than any single voice could.

Now don’t get me wrong, individuals can make a huge amount of difference. I’ve seen it happen so many times within the HG world: the woman who dedicates vast amounts of time to supporting other women who are suffering through a hell that only she can understand; the doctor who goes above and beyond to ensure that a patient in their care receives the best possible treatment; the team of midwives who agree to meet and listen to a woman share what HG was like for her and how to best support other women like her; and the partners, family and friends of a sufferer who rally around her to make every day as easy as possible, and attend medical appointments to help advocate for her when she is unable to do so herself. These are all really important ways in which individuals make a massive difference to those around them. And we should never underestimate how much change one person can make! But it is through working together that lasting change on a large scale is achieved.

The changes I have seen over the past three years have come about because many, many individuals have come together for a common cause. Multiple charities have formed working relationships which enable them to achieve more together than they ever could alone. The international collaboration of the two big HG Charities, Pregnancy Sickness Support (PSS) here in the UK and The HER Foundation in the US, sparked the idea for an International Hyperemesis Gravidarum Awareness Day. And a recent collaboration between PSS and the British Pregnancy Advisory Service (BPAS) enabled the production of a report on the number of women feeling like they have no choice but to terminate a much wanted pregnancy due to Hyperemesis. This report led to further media coverage, including mentions on the front page of national newspapers and an interview on Women’s Hour, something which may not have happened without working together.

Even within the individual charities themselves, there are great developments occurring, and this is all because of the sheer number of people supporting them. Take PSS, for example: the active forum is only thriving because of the many members supporting each other through the opportunity offered to them on there; the Support Network only works because of the amount of dedicated volunteers who offer their time and support to those in need (it also relies on many others spreading the word about its existence, as well as funding for staff to coordinate it and further developments); and the research undertaken often relies on the various voices of those who have suffered coming forward and sharing their stories.

This time last year my life was pretty much overtaken by the cause – I was working vast amount of hours every week as the Volunteer Coordinator for PSS and also working on final edits of Hyperemesis Gravidarum: The Definitive Guide. I lived in a world that was full of equal amounts of desperation from those currently suffering and passion for change from those who had survived HG. And despite personally dedicating huge amounts of time and energy to the cause (too much, in retrospect, for a healthy work/life balance), I never once lost sight of the fact that it was the multitude of individual voices that were making the vast changes I was lucky enough to see happening right before my eyes.

My life is very different now to what it was this time last year. 12 months ago I was burning out, fast. Despite the fact that there were many, many people working together to enact change there just weren’t enough of us to make change on the scale that we wanted to. It is a battle that so many causes face, and it is one that is only won through people coming together so that their individual voices are amplified by those singing the same tune. The greatest lesson that I took from my time with PSS was this – one person can change the world, but only through working with others.

So today I am asking you to think about what is important to you. What do you feel passionate about and what do you wish you could change in the world? Please don’t ever think that you cannot make a difference, because you can. Don’t compare yourself to others and feel that you aren’t strong enough or wise enough or talented enough – everyone has something that they can give that is unique to them and will, when given the opportunity, make the world of difference. Whether you can give 10 hours a week or just the odd hour here or there, whether you have specific skills, knowledge and experience or are simply passionate about the cause, and whether you feel confident approaching others or terrified of making that first call, please do consider taking that leap and contacting a group or organisation who need your support and will welcome whatever you can give.

Together we can achieve great things… and it all begins with you!

Hyperemesis Gravidarum: The Definitive Guide

Hyperemesis Gravidarum: The Definitive Guide – Our Book is Out Now!

Hyperemesis Gravidarum: The Definitive Guide

I can barely believe it… 3 years after the end of my own HG pregnancy, and after many, many hours spent pouring over research, talking to other sufferers and survivors, and then writing and editing until my eyes felt like they would pop out of my head, the book is finally here!

Excuse me whist I squeal for just a minute or two… *squeeeeee*

I am anxiously awaiting my own “in print” copy (my co-author has hers already!) and then I shall update this post with a celebratory photo. But for now, let me tell you more about it…

The book is 232 pages long, packed full of information based on the latest research, suggestions and anecdotes from other sufferers and survivors, and a whole pile of resources to help anyone who is currently suffering from hyperemesis gravidarum, those who have previously suffered, and those who are planning another pregnancy.

But it isn’t just for sufferers, oh no, we wanted it to be THE definitive guide and so we have also dedicated chapters to partners and carers as well as healthcare professionals too. What more could you want?

Not much, it seems, because despite the books still being “preorder only” on Amazon we have already hit #4 on the bestseller list for the category “Pregnancy and Childbirth” and we only started sharing the link at around 8:30pm last night… that’s #4 on the bestsellers list in our first 12 hours of selling, 12 hours which were overnight I might add! I’m not sure either Caitlin or myself can quite believe it!

Hyperemesis Gravidarum: The Definitive Guide #4 Besteller on Amazon

The book is aimed specifically at a UK audience, as we have based an awful lot of the treatment chapters on the NHS services available. However, there is still a vast amount of information available for sufferers and survivors elsewhere in the world, and so the book is also available through amazon.com as well as amazon.co.uk

It is currently only available in paperback, at a price of £10 per copy. However an eBook version is coming very soon and we will let you know as soon as it is available!

I’d like to take a moment now to thank everyone who has supported me (and Caitlin) throughout this entire process. I’m pretty sure I probably sounded crazy when I announced to my family that I was going to write a book about HG when my son was only 3 months old. I’m pretty sure I was slightly crazy, to be honest, having seen just how much time and effort it has taken!! But I have been supported from start to finish from family, friends and the online community alike and for that I want to say a  massive thank you. I would not be celebrating today if it weren’t for that support.

Thank you!

All that is left to say is that I do hope you will go and buy a copy of the book and find it useful. If you do, please consider leaving a review for us on amazon, as that will increase our exposure and ranking. I’d also love to hear from you here on the blog if you have bought and read the book – let me know what you think.

If you are a journalist or PR agency and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956 

Being Interviewed live on Good Morning Britain

Talking About Hyperemesis Gravidarum In The Media

I’m currently sitting on a train, heading back home to my one and only beautiful HG Survivor and reflecting on how my experience during pregnancy has completely changed the direction my life has taken.

Had you told me a few years ago that I would be appearing on national breakfast tv to talk about a medical condition I would have thought you were crazy. But that’s what I did today…

GMB 1

Photo courtesy of Emma Harris

As you may know, I have devoted the past 3 years of my life to raising awareness of the truly awful pregnancy complication Hyperemesis Gravidarum (HG). This has involved working on a book about HG (which I started way back in 2012, finding a co-author in Spewing Mummy in 2013) and working for the charity Pregnancy Sickness Support. I have worked tirelessly to promote the charity’s work, support other sufferers and survivors, and get word out that that this is not morning sickness!

GMB 2

 

Photo courtesy of Emma Harris

Which leads me to this morning, when I found myself sitting on the sofa of Good Morning Britain, talking with Dr. Hilary Jones and the presenters Charlotte and Ben about my own experience of HG. Why? Because with news of the Duchess of Cambridge suffering from HG for a second time, there has been a fair amount of media interest in the subject.

Understandably, the response to this has been varied. Some sufferers are over the moon that HG is being presented to the public in this way, having faced lots of criticism over their own pregnancy sickness in the past. Others are disappointed that it is still being described as “acute morning sickness” and that comments about trying to avoid medications in the first trimester or trying ginger are still being offered up as advice.

But here’s the thing for me… HG is making the news! And whilst we still have a long way to go, we are getting there. 

Whilst there were comments about ginger, it was made clear that this may not apply to HG (it doesn’t) and whilst there is hesitancy over prescribing medications in the first trimester, they are not being disregarded completely. We are not hearing that there is “nothing they can do” or that treatments are harmful, both of which are common messages sufferers often come across.

And whilst my short interview may not have provided the opportunity to discuss these issues in more detail (my co-author and colleague had this opportunity later on with Phil and Holly on This Morning!) it did provide media attention that is so very needed.

This Morning

Caitlin on the This Morning sofa, photo courtesy of Emma Harris

Let me tell you something… whilst I talk about HG on a daily basis, whilst I have written a book on the subject and talk to sufferers every single day, going on live tv is on a whole different level.

And talking about my own experience, well that was pretty crazy too! I tend to try and keep the focus on general experiences of HG sufferers rather than my own personal experience. This is partly because this more detached focus is needed in my work both for the charity and on the book. But it is also, in a larger part, because I have been burned too many times by people labelling me as “milking it” or a “drama queen” and I struggle with that. A lot.

I do what I do to try and help others – after all, I shall never be having another pregnancy myself, so all this work has no personal benefit to me! I do it because I do not want others to suffer the way I did, because I am the perfect example of someone whose HG went undiagnosed and untreated for far too long. Here are a few personal facts for you:

  • I was never officially diagnosed with HG
  • I was given treatment early on which made no difference and then told there was nothing else they could do, despite multiple trips to the GP, until my 5th month
  • I lost over 10% of my pre-pregnancy weight
  • I was surviving on approx. 300ml of liquid per day at my worst point
  • I was refused IV hydration or admission to hospital, despite being told I was “clearly dehydrated” by the nurse assessing me
  • I was told various things from healthcare professionals including “it’s just because you are worried about the pregnancy” and “sometimes you just have to ‘put up and shut up'”

As such, I have doubted my experience for a long, long time. I haven’t felt a true part of the HG Community of women who had multiple admissions, knew all about ketones, or were prescribed a variety of antiemetics. I felt like a fraud for a very long time… yet I clearly had HG and I clearly needed treatment. Based on the facts you cannot dispute that, and yet I still question myself. And that is the legacy that HG leaves, especially undiagnosed and poorly treated HG.

HG stole the joy of pregnancy from me. It stole my dream of having a larger family (we’re sticking at one child). And it stole an awful lot of confidence from me, confidence which I worked extremely hard to develop over many years.

Going on live tv was utterly terrifying in many ways, especially knowing just how many other women were relying on me to give an accurate portrayal of the sheer hell that is HG. I have no previous media experience of this kind (freelance writing or social media, yes, but tv and radio, not at all). And I am certainly not used to talking about it from a personal perspective. But my experience has been so profound that I know I would do anything and everything I can to create change for all those other women out there who are suffering now or have suffered in the past. And if that includes going on live tv, then so be it!

GMB 3

If you are a journalist and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956

For more information regarding the above topics, please see the following:

Hyperemesis Gravidarum: The Definitive Guide
One Child Family
My Pregnancy Journey

You may also be interested in the following posts I wrote during the Duchess of Cambridge’s first pregnancy, regarding the importance of accurate reporting.

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

 

International Hyperemesis Gravidarum Awareness Day 2014 – What It Means To Me

 


HGAwarenessDay_UKurl_FB_ProfilePic

Morning all.

After the flurry of the past couple of weeks (both with hospital appointments and work) I find myself sitting here on the morning of 15th May, a date I have been working towards all year, realising I have not even thought about what I would write today. And that surprises me, because for all the work I do in the HG World and all the times I think about it, I somehow seem to have been avoiding writing a post like this. What does HG (Hyperemesis Gravidarum) mean to me?

I actually and honestly do not know where to start with this one. There is no simple answer. In many ways HG was the unrelenting thief that stole away my health during pregnancy, took the joy of carrying new life away from us, and even wiped away a lot of the joy of becoming new parents when depression hit. And that thief continues to work today as it steals the dream of having more children away from me. But HG also gave me an awful lot…

It gave me greater compassion for others, realising that pregnancy isn't the easy-going, exciting time you hope it is for a lot people. Whether it's HG or some other complication, pregnancy can be tough and we all need support to get through that. 

It also gave me even deeper determination to create change. I've always felt a strong desire to fight for those who need it, but without the absolute horror that was my HG experience I don't think I would ever have thrown myself quite so passionately and completely into anything. When I look back over the past 2.5 years since having Little Man I cannot believe just how much I have done. I threw myself almost with wild abandon into a world which needed strong voices to stand up for those who, like I myself had been during pregnancy, were unable to fight for themselves. 

I have written a book. This is nothing new, pretty much everyone who has ever known me well has expected I would write a book one day. But this was not the sort of book I expected to write at all. Prior to my pregnancy I started writing a novel… that was the sort of book I thought I would write. Not an extensive guide to a medical condition. I mean, I don't even have a medical background. It's been tough, I've had to learn an awful lot and have spent hours pouring over research and learning what it all means. And I very nearly gave up several times. But I didn't and thanks to the wonderful passion of my co-author we got there. Our book is currently with the publisher and should be out later this year!

I have also organised two handmade auctions to raise money for the charity Pregnancy Sickness Support (PSS). The first came out of the sudden idea that everybody loves to receive a handmade gift, so why not run an auction and raise money for the charity I loved and wished had been around when I was pregnant. That first auction raised just over £300 for PSS, whereas this year's is still live and will be until Sunday 18th May 2014 at 10am, so why not pop over and see what goodies we have. Some of them are items I made as part of my Nine Months Of crochet challenge – another endeavour I'd have never undertaken without knowing just how hard HG is and how worth every minute the effort was.

And finally I am now the Volunteer Coordinator for PSS. I cannot tell you how much of a privilege it is to go to work every day and work with over 100 volunteers around the country who are as passionate as I am about supporting women in their darkest hours and creating change for the women who are yet to face this journey. I speak to women on a daily basis who are in the throes of HG and I am reminded constantly of how harrowing that experience is and I know, without a doubt, that no matter how overwhelming my work is (and it really is a lot of the time!) it is worth it. Because at the end of the day, we are offering the support and information women and their families need to survive a HG pregnancy and meet their babies at the end of nine very long and hard months.

Which leads me to the greatest thing that HG brought me – my beautiful son!

I know that HG isn't really what brought Little Man to me. I would have had just as beautiful and gorgeous a baby boy had I sailed through pregnancy without any kind of sickness at all. But because it was such a hard-won battle I am constantly aware of just how very lucky we were that I didn't give up, that I didn't allow the terrible medical care I received to push me beyond my limits, that I didn't find myself making the awful decision that some women with HG feel that have no choice but to make and end the pregnancy. I'll never forget that.

But for all that, my heart still breaks at what HG has stolen from us. That awful thief which made my pregnancy a living hell and which has left us feeling like there is no way we could ever go through it again, even with the extra support that PSS provides. I think back to my pregnancy and wonder how different it might have been were the support network and website PSS has today available in 2011. Would I have allowed myself to get to my 5th month before getting any kind of helpful medical support? Would I and my husband have felt so utterly alone and terrified? Would we have made the painful decision to never have another child of our own?

I'm not saying the support makes HG easy. It does not. But it can make it easier and that is something I will work tirelessly for until the day when HG is taken seriously and women are treated promptly and effectively without having to battle for it. I'll fight so that no other woman has to make the decision to never go through the happy times of pregnancty – the joy of a positive result, the excitement of the first scan, the wonder of the very first kick, the fun in choosing a name, and the overwhelming emotion that comes with holding your baby in your arms for the very first time.

Writing that makes me cry, because quite frankly I want nothing more than to be able to do that all again. But I can't. Sometimes I am perfectly okay with that and other times it breaks me apart. It is like a grief that sneaks up on you when you're least expecting it. And I know so many other women feel that same grief. And I'll fight for them too.

Every woman's experience of HG is different. Some do it once, some do it multiple times. Some are in and out of hospital, some never get admitted even once. Some receive excellent care, others are treated in an appalling way. But one thing remains true throughout all of this… HG brings us together. Once you have experienced it you know the depths of another sufferer's heart and that brings us together in a wonderful community of support and acceptance. And that is something HG gives instead of taking away. And that's what I want to end this post with.

For the second year running, PSS has created an awareness video, sharing the photos of HG sufferers and survivors. And for the second year running it has moved me to tears. Please consider watching it as it shows so much more than I can possibly do in my words alone. The video below is only viewable on the computer, so if you are reading this on a mobile then please click this link to view the mobile version.

Thank you all for reading. If you want to know more about the work of PSS and how much is being done today to raise funds and awareness, then please do their blog at www.ninemonthsof.com

 

Want to read more?

There are some amazing bloggers out there who are writing about their own experiences of HG (or severe sickness that hasn't quite been diagnosed as HG). If you don't know where to start, here's a list of some of my favourites:

Adventures of Adam – Emma is a trustee for PSS and writes a blog about fun activities she does with her son, Adam. She has a whole host of HG Friendly Activities – things you can do with your kids that are easy to set up, take very little adult input, and are unlikely to set off triggers such as smells or movement. Her blog has been shortlisted for an award in the BiBs – you can vote for it in the Fresh Voice Category here. Emma wrote about her own HG experience here

Diary of a Charity Chick – Susie is another trustee for PSS and writes a blog about her charity work not just for PSS but also in other areas. Susie is a whirlwind of activity and never seems to stop, so it is great to see all that she is achieving! She has written a post today which you can read here.

Me, The Man and The Baby – another Emma, this time an award winning blogger who is once again shortlisted for another award for her posts about pregnancy! I came across Emma's blog on Twitter and have followed her journey since. She has written about HG today as well and you can read that post here

Mummy Whiskers – Katrina is an amazingly committed PSS volunteer and whilst I knew her before I became the Volunteer Coordinator my respect for her has grown so much since I took on the role and discovered just how much passion, energy and enthusiasm she has for the charity and the women we support. Katrina started her blog last year and it has gone from strength to strength ever since and she has written an incredibly thorough round-up post today which you can read here. 

Ruby + Lottie – Kimberley is another PSS volunteer who is also a blogger (seems there are a few of us!) and she shared her HG experience with the media (newspapers, magazines and radio) as well as on her blog. She has written a post about it today which you can read here

Spewing Mummy – Caitlin is, without a doubt, the most enthusiastic advocate for women with HG I have ever come across. She helped redesign the PSS website, started the support network, runs a blog (which has been shortlisted for not one but two blog awards this year! You can still vote for her in the Commentary and Campaigns category in the BiBs here) and helped me write the book about HG. She is, and always has been, my inspiration and I am constantly amazed by how much she has achieved and continues to achieve for women with HG. I am so proud of her and would recommend you follow her blog if you're currently suffering from HG. 

Today I’m in Tears… International Hyperemesis Awareness Day

HG Awareness
Well, the title says it all I guess… today (May 15th) is International HG Awareness Day, and it has hit me in a way I really didn't expect it to.

It's been a really tough time for me, coming to terms with my pregnancy experience and the choice we have since made to never have any more children. And just when I think I have a handle on things, when I think I have found peace with it all, something crops up to remind me that there are still times when I shall wish with all my heart and soul that things had been different.

The other night I had a dream that I gave birth to two more children. I remember dreaming some very specific things, like making myself cherish the bump because I knew I would never again get that opportunity. And when I woke, I felt empty. It wasn't real and it never would be. And that hurt more than I can tell.

But then, I remembered why we made this decision. I saw the photos of women during their HG hell, and I heard the awful way in which women and their families are still being treated. And it reminded me that I never, ever want to have to face that again. It's not just 9 months of your life, these things stay with you a very long time. 

But still… talking with all the HG sufferers and survivors this week about their experiences and how much the support means to them, made me realise just how strong we all are. We've survived hell and some very brave women have done it more than once. They are far braver than I am!

Which means that instead of writing a long post about why I am so passionate about supporting these women and their families, I am going to turn it over to them to show you. If you do just one thing today, please let it be to watch the video below. It is the greatest testament to the strength of these women and the reason why I will not stop campaigning for the charity Pregnancy Sickness Support until every woman gets the treatment and support she needs, and more importantly, deserves. 

Thank you.

 

Video credit: This video has been created by Emma Edwards, a volunteer for Pregnancy Sickness Support.

Please remember that my eBay auction is still running and is full of a wide range of handmade items. 100% of all the money raised from the auction will go directly to Pregnancy Sickness Support. 


The following posts have all been written to share very personal accounts of what HG is truly like. Please consider reading some of them!

Expectations Before Falling Pregnant Versus Reality

Ginger is Not a Cure: My Hyperemesis Hell!

 

The following is a poem written by someone I know through Pregnancy Sickness Support

 

PLEASE NOTE:

HG Awareness Day is all thanks to the HER Foundation, a US based charity that has been working tirelessly to support women with Hyperemesis Gravidarum through research and education. During my own pregnancy in 2010, it was the HER Foundation I turned to for support as at that time I did not know Pregnancy Sickness Support existed. The two charities are in regular contact and work together to ensure that women either side of the Atlantic receive the best possible support and care. So whilst my own efforts are focussed mainly on supporting women here in the UK, I feel a great need to also support th HER Foundation in any way I can.

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

I thought it would be helpful to create a "go to" list of resources that can offer support, information and personal accounts of what it is like to suffer from Hyperemesis Gravidarum.

These are all groups, blogs and resources I have come across in the past year while researching for the book I am writing. If you know of any others that I have missed, or have a blog of your own, please do send them to me via my contact form or on twitter

 

Charities and Support Groups

UK Based

Pregnancy Sickness Support is a national charity here in the UK that aims to inform and support women, their families, and those involved in their care. They have a wealth of information on their website and run a volunteer support network and a telephone helpline. 

Pregnancy Sickness SOS is another UK based site providing information on HG.

US Based

The Hyperemesis Education and Research Foundation (Her) is a US based site which also has a huge range of information, research and support available for sufferers, their families and healthcare providers.

The Ayden Rae Foundation is an organisation that is fighting hard to aid the discovery of a cause and cure for HG. 

Beyond Morning Sickness is a site dedicated to raising awareness and sharing the stories of HG survivors. There is a book of the same name, which many HG sufferers read and rely on, and which was the inspiration for producing a UK based book (which is what I am currently working on). 

Canadian

The Motherisk Program in Canada carries out lots of research into pregnancy complications and possible treatment options for them, including HG. Some of their research is included below.

European

Steunpunt HG is a Dutch website offering support and information to HG sufferers.

 

Support Groups

UK Based

Pregnancy Sickness Support (Hyperemesis) UK (Facebook Group) 

Partners' Pregnancy Sickness Sickness Support (HG) UK (Facebook Group)

Mumsnet Hyperemesis Support Board

BabyCentre Hyperemesis Group

US Based

HelpHer Forums

 

Resources

NVP and HG "Cheat Sheet" 

I wrote this "cheat sheet" as part of the book and have reproduced it as a PDF download for easy access. 

Diary for NVP and HG symptoms

Pregnancy Sickness Support have put together this fantastic printable weekly diary for monitoring symptoms of nausea and vomiting during pregnancy. 

 

Blogs

Instead of splitting this group according to country, I have decided to make two groups: "current blogs" (those which have been updated recently) and "archived blogs" (those which have not been updated in the past 3 months, but may still be of interest). 

Current Blogs

HG Survivor

Beadzoid

Mother Eartha's Blog

My Story of Hyperemesis

Knocked Up Knocked Over

Hyperemesis Gravidarum: Through The Fog 

The Leaky Boob

Spewing Mummy

 

Archived Blogs

Midwife to Mum

HG Sucks

My Friend Zofran

HGDad

Hyperemesis Gravidarum: A Journey Through Our Second Pregnancy

Hyperemesis Heroine

Baby You're Making Me Sick

 

Twitter Feeds

The following people on twitter are very active in the HG community

@HGSupportUK 

@AydenRaeFDN 

@Jenni_Wynne 

@pwynne82 

@JaynieN 

@Angeline1611 

@pandabear_rocks 

@KnockedUp_Over

@MumtoAandB

 @HGHusband

 @Mum2LilyandPops

@lauren___d

@Comfortably_Mum

@midwifetomum

 

As with anything, this is not an exhaustive list. Please, please do let me know if you have any other links I can add to this post!

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

I’m pretty sure that most people have heard the news about the Duchess of Cambridge being admitted to hospital for Hyperemesis Gravidarum (HG). I’m also just as sure that many are thinking “oh just get over it!” because that is the reality of HG, hardly anyone knows what it is or understands how truly awful it is. And unfortunately, with the media using terms such as “acute morning sickness” and relying on the limited knowledge of doctors who have no specialist experience in this area (no disrespect to them, it’s just it is a very specific area), this isn’t going to change very fast.

And so, as a HG survivor who has dedicated most of the first year of her child’s life to researching about the condition, writing a book about it, networking with others and raising awareness, I feel it is time to turn over my blog for a while to the subject.

So let’s start by passing on my sincerest best wishes and support to the Duchess. Hyperemesis is a truly awful condition, terrifying in its severity, isolating in the fact no one understands what you’re going through, and a battle from start to finish. If, like most of us, her symptoms peak between around 7 and 10 weeks, it is going to get worse before it gets better, and could be with her throughout the entire pregnancy. And she has to do this all in the public eye. My heart goes out to her, as it does to any woman suffering from HG!

So what is it?

Well, for starters, it is a severe form of Nausea and Vomiting of Pregnancy (NVP). The term itself basically translates as lots of vomiting (hyperemesis) in pregnancy (gravidarum). It is not “morning sickness”, in fact we need to get away from using that term altogether. It is an outdated term, that trivialises the condition, not only for those with HG but also those with mild-moderate symptoms.

NVP affects up to around 80% of all pregnant women in some form or another. Perhaps this is why there is so much judgement and so little support and understanding for those with more severe forms. If your experience of NVP is that you “felt a little queasy” for a few months  you may find it difficult to imagine the severity from which some women suffer. However, around 30% of women require time off work to cope with their symptoms, and 35% have symptoms that are of clinical experience. So whilst only around 1% of women suffer from HG, NVP is still nothing to be laughed at!

For those 1% who do develop HG, their pregnancy can go from joyous to a nightmare in a matter of days. The severity of sickness doesn’t just build up slowly, it can go from next-to-nothing, to manageable, to totally debilitating within a week. So for all those who wonder how the Duchess could have been so very active and well last week and hospitalised this week, that is why.

Thankfully, since the invention of IV hydration, HG is not the life-threatening illness it once was. However there is still a major need for treatment. Women with HG become dehydrated easily, they can suffer from electrolyte imbalances which can lead to further complications, and they can lose weight extremely quickly. HG is often described as being present in women who lose more than 5% of their pre-pregnancy weight, but many women lose double this amount and more.

IV hydration and anti-emetic medication can help to control the symptoms and make eating and drinking more manageable for the HG sufferer, but unfortunately due to so much misinformation and a fear of treating pregnant women, many have to fight for the treatment they need and deserve. This should not be the case! There is plenty of research out there that includes safety data of various anti-emetic medications and the importance of timely treatment. I have included links to some of these at the bottom of this post.

There is a lack of awareness in the medical community. Many GPs and midwives continue to treat women with HG as having “morning sickness”, giving out the usual advice of “eating little and often” and trying “ginger”, neither of which are helpful for a woman who is vomiting multiple times each day and unable to function. There is a real need for better education on the condition, and it seems there is also a very real need to raise awareness of it in the media as well.

I feel both sorry for the Duchess and relieved that it is finally being covered by the media. But we have a long way to go. Even the BBC is using the term “acute morning sickness”, and this needs to change. The charity Pregnancy Sickness Support, who I am closely connected to, are working tirelessly to change this. But we need help. We need you to retweet, to reblog, to share on other social media sites, to work with us to effect change.

Please don’t just read this news and think “poor Kate” and then forget about it. HG affects a woman for life. Antenatal Depression, Postnatal Depression and Post-Traumatic Stress Disorder often accompany a HG pregnancy. Women and their families affected by it are left with the awful decision of whether to face another pregnancy to expand their family or choose not to have any more children. It doesn’t end after 9 months. So please, read about it and spread the word.

For more information check out:

Pregnancy Sickness Support

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

My info page on Hyperemesis Gravidarum

The Hardest Decision (my post on choosing not to have another pregnancy)

please feel free to email me your own links to add!

References:

Asker C, Nordstedt Wikner B, and
Källén B. 2005 Use of antiemetic drugs during pregnancy in Sweden.
European Journal of Clinical Pharmacology 2005; 61: 899-906

Christodoulou-Smith J et al. 2011
Posttraumatic stress symptoms following pregnancy complicated by
hyperemesis gravidarum. The Journal of Maternal-Fetal and Neonatal
Medicine

Ebrahimi et al. 2009 Nausea and
vomiting of pregnancy: using the 24-hour Pregnancy-Unique
Quantification of Emesis (PUQE-24) scale. Journal of Obstetrics and
Gynecology Canada 31 (9): 803-7

Einarson et al. 2004 The safety of
Ondansetron for nausea and vomiting of pregnancy: a prospective
comparative study. BJOG: an International Journal of Obstetrics and
Gynaecology 111: 940-943

Farrell N. 2008 Hyperemesis
gravidarum: how midwives can help. The Practising Midwife, 11: 12-14

Gadsby R and Barnie-Adshead AM. 2011
Nausea and Vomiting of Pregnancy a Literature Review. Pregnancy
Sickness Support Website

Ismail SK and Kenny L. 2007 Review
on hyperemesis gravidarum. Best Practise & Research Clinical
Gastroenterology 21 (5): 755-769

Jarvis S and Nelson-Piercy C. 2011
Management of nausea and vomiting in pregnancy Clinical Review
article. British Medical Journal, 2011-12-23, 342; 1407-1412

Koren G et al. 2005 Validation
studies of the Pregnancy Unique-Quantification of Emesis (PUQE)
scores. Journal of Obstetrics and Gynaecology 2005; 25 (3): 241-244

Koren G. and Maltepe C. 2004
Preemptive Therapy for Severe Nausea and Vomiting of Pregnancy and
Hyperemesis Gravidaum. Journal of Obstetrics and Gynecology 2004; 24;
500-503

Matok I et al. 2009 The Safety of
Metoclopramide Use in the First Trimester of Pregnancy. The New
England Journal of Medicine 2009; 360: 2528-35

Mazzotta P and Magee LA. 2000 A
Risk-Benefit Assessment of Pharmacological and Nonpharmacological
Treatments for Nausea and Vomiting of Pregnancy. Drugs 2000, 59 (4;)
781-800

McCarthy FP et al. 2011 A
Prospective Cohort Study Investigating Associations between
Hyperemesis Gravidarum and Cognitive Behavioural and Emotional
Well-Being in Pregnancy. Plos One, 6: 7.

McParlin C, Graham RH, and Robson
SC. 2008 Caring for women with nausea and vomiting in pregnancy: new
approaches. British Journal of Midwifery 2008; 16 (5)

 

Hyperemesis Gravidarum

I just wanted to let you all know that I have now updated the page on Hyperemesis Gravidaum here on the blog.

I have been struggling a lot with this over the past few days and have plenty I’d like to write about, but also have very limited time to blog right now because I want to spend as much time with Little Man as possible.

In short, I have been struggling with seeing other pregnant women, especially those pregnant with a second or third child, because that makes me face my decision to never go through pregnancy again. And that hurts. Anyone who knows me well will know I always looked forward to being pregnant and having a family and to turn my back on expanding my family in that way is painful.

As it stands we won’t want to even think of expanding our family until Oscar is several years older because I need to get my health sorted, having been ill for several years with Endometriosis and the treatments for it before my Hyperemesis Gravidarum hell last year. We still aren’t sure whether we will have more than one child and whether that addition will be through adoption or not.

This past week I started wondering if I shouldn’t have said “never again” so hastily during my pregnancy and yet I know I would be terrified to try again. So basically I am torn in two by it all and am trying to work through my thoughts and emotions rather than pushing them down and letting them build to unbearable levels.

Of course these decisions don’t need to be made now. And I am more than happy with Oscar being an only child for the time being. I love every minute with him and want to cherish these early years and would be quite happy if we didn’t expand the family until he was 4, 5 even 6 maybe. But I know that one day I will have to make the decision as to whether I can face the possibility of HG again or whether Tim and I need to look at adoption or even remaining a one child family.

So I am trying to deal with these emotions as they come up. I don’t want to feel jealous every time I see a pregnant woman. I don’t want to have to change channel every time an advert for One Born Every Minute comes on the tv, or turn of Twitter because it is trending. I don’t want to become bitter about it, and so that means I need to work through it.

So I decided now was the time to finally get around to writing my page on Hyperemesis and I would be hugely grateful if you would check it out.

This post has been added to the Tuesday Tea and Sympathy Linky. Click on the image below to check out the other posts taking part.

 


meme2

 

Emotional Fallout

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Hello, I'm 4 weeks old and I'm gorgeous!

I can't believe it has been 4 weeks since we met Little Man and already our life as a family of three feels so right that we cannot imagine it being any other way.

There are so many things I want to write about already, and yet it is the very fact that so much is happening in our lives that I want to write about that keeps me from writing. I am far too busy loving on my boy to get online to write these days. But I will be back soon as the things I want to write need to be written, if nothing more than to give me a record of all the things I'm thinking and feeling right now!

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One of the major things which I think will take several posts to cover, is the emotional fallout of the pregnancy I had. Whilst in it I couldn't wait for it to be over and the nightmare of how ill I was to pass. I never, ever wanted to be pregnant again and although that thought hurt me inside, I was too focussed on the physical to deal with the emotional side of things (not to mention that crying made me throw up!)

But now Little Man is here and I get to fall in love with every part of him more each day I realise just how big that is. I see his tiny toes and his attempts to smile and realise we won't do this again. And that hurts. I see my sister-in-law pregnant with her third child, looking forward to the new arrival with her first two children and realise Little Man will never get to experience the anticipation of a baby brother or sister. And it hurts. But more than that, when I look at him and know he was worth every second of being so ill I feel guilty for not being willing to do it again. But I can't. I don't want to put myself or TJ through that again. Nor do I want to miss out on several months of Little Man's life through being that ill again. And that really hurts.

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Deep down I know how incredibly blessed we were to fall pregnant and have a very healthy baby boy at the end of the pregnancy. Some people never get to live this dream. I will never forget that, but it doesn't stop the hurt.

And even without these aspects of the pregnancy experience I had there are still the remnants of sickness that remain 4 weeks later, the extreme exhaustion from being very ill for 9 months, and the fear surrounding both getting ill or falling pregnant again. There are certain foods I don't think I'll ever want to touch again. There are certain songs, tv programmes, and books that take me right back to the moments I listened to, watched or read them in an attempt to take my mind off how very sick I felt. And I have a feeling that certain times of the year will always remind me of my very worst days.

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Don't get me wrong: I am loving being a mum and I am spending most of my days with a massive grin on my face. But the emotional fallout is still there and it hits me at the strangest of times. I imagine it will take quite some time to work through it all and I am sure I will have a lot to write about in weeks to come. But for now I just wanted to note that although I am in heaven with my baby boy, there are these emotions that need to be recognised, honoured and faced and so it may take me a while to get back to regular blogging and I may even take to blogging several posts at a time if my mind needs to get several things sorted at some point. But whichever way it happens, I will keep writing and posting photos of my dear, sweet boy!

Thank you for reading xx