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Journey into the world of hyperemesis gravidarum...
25Apr 14

HG Heroes Dr Debra Wignell and Brendan Cronin

It's long passed due for another HG Hero post to recognise all those people, doctors, midwives, partners, employers, parents and friends who go above and beyond to help hyperemesis sufferers suffer a little less. These people set an example to others of how a little bit of compassion, understanding and care goes such a long way for people feeling isolated, scared and misunderstood. Many HG Heroes claim they have done nothing extraordinary or remarkable and have simply done as they would always do. What they don’t' realise is that although their care isn't entirely unique, it is sadly rare – although hopefully not for much longer. By highlighting their achievements I hope it will normalise it and make poorer treatment and ignorant care less acceptable.

Elizabeth Cronin is here thanks to the wonderful care of Dr Wignell and the unfaltering support from her dad Brendan Cronin

Elizabeth Cronin is here today thanks to the wonderful care of Dr Wignell and the unfaltering support from her daddy, Brendan Cronin

Victoria Cronin has been through two hyperemesis pregnancies and wrote to tell me about the exceptional care she received from her GP, Dr Wignell at Windrush Surgery in Banbury. The treatment she received from Dr Wignell meant that her second pregnancy, although still a struggle was significantly better than the first.

After seeing a number of different doctors at the practice during my first pregnancy, it was not until I got an appointment with Dr Wignell that my hyperemesis was taken seriously. Having nothing to compare with, I accepted what I was told by medics and midwives that sickness was normal during pregnancy. Despite being terribly ill, not one of them checked my ketones or appeared to believe the amount I was vomiting and little I was able to eat and drink.” Victoria tells me.

When Victoria eventually saw Dr Wignell she consulted a colleague at the hospital for guidance on treatment and then started medications which made a huge difference. “She did not make me feel guilty for taking medication and believed me that I was seriously ill. Proper control via medication swiftly got the sickness under control, and I was very fortunate to be much better by 25 weeks.” Says Victoria

But it was during Victoria's second pregnancy that Dr Wignell's care really made the biggest difference. “I was understandably very anxious about planning another pregnancy with a risk of the recurrence of hyperemesis. Before the pregnancy I met with Dr Wignell, and she patiently let me fire questions at her and put a plan in place to ensure that should I get hyperemesis gravidarum again that I'd get the effective medications earlier, and that my illness be taken seriously. She ensured that there was a proper record in my notes should I not be able to get an appointment with her so that her GP colleagues would prescribe what I needed. She also arranged for me to have a pre-pregnancy meeting with a consultant at the hospital who put an hyperemesis management plan in place for me.”

Dr Wignell made sure I some of the medications in advance so that I could take them as soon as I started to feel even mild nausea, pre-emptively. Once I fell pregnant, and the sickness started again with a vengeance, I was given the medications that worked best for me with no battle at all, and I was also able to easily get hold of it on a repeat prescription without having to return to the surgery.”

So many women report difficulty in getting ongoing supply of essential medications. Often they are met with prejudice and criticism from receptionist and pharmacists about taking medication in pregnancy, or when a usual GP is off a colleague will alter treatments or refuse to prescribe repeats.

Victoria tells me about how this extra care she received made such a difference for her “I doubt Dr Wignell realises what an impact she had on my life and my family's life, by supporting me though the illness and such a better level of management during my second pregnancy. It made life so much more bearable, which was crucial having a toddler to look after too. Going to bed for the day was not an option this time, but the fantastic standard of care she gave me meant the hyperemesis was under control from the outset and much less severe than the first time I suffered from it. Her support before the pregnancy gave me confidence and allayed much of the anxiety I had about becoming pregnant again. Although I don't think I have the courage to go through another pregnancy feeling so poorly, Dr Wignell's support and level of care was amazing, and I'd like to thank her very much.”

On behalf of hyperemesis sufferers around the world I would like to join Victoria in thanking Dr Wignell. She is setting an example of care and compassion which one day will be the norm. I hope she feel proud reading this as she should... Victoria's baby is here thanks to you Dr Wignell.

Victoria also wanted to take this opportunity to thank her husband. Surviving hyperemesis is rarely a matter of just getting medication and a good doctor, although they massively help. In reality none of the current treatments available are actually cures for hyperemesis gravidarum and support is therefore vital to making it through with your life, your baby and your sanity. A great doctor is worth their weight in gold but second only to a supportive partner, whether that's a husband, wife, mother, sister, best friend or any other significant other.

Victoria tells me “I'd also like to thank my darling husband who has cared for me throughout two hyperemesis pregnancies now. The sickness came as a shock to both of us, as we just weren't expecting pregnancy to be that awful! I had to spend months in bed and hovered over the toilet, during which time Brendan took over all the household work, cooking and cleaning as well as his full time job. My being completely housebound for so long obviously completely effected our lifestyle, and it significantly impacted his quality of life as much as mine. But he was my unfaltering rock throughout it all. He brought me whatever I needed when I needed it and was always supportive and encouraging, helping to keep me motivated and focused on the end result. He managed to keep me positive, even when I felt like death. He accompanied me and supported me at all medical appointments. We got through it together. And now we have two wonderful children. Hyperemesis was hell, but Brendan made it bearable.”

Brendan also sets an example to other dads out there with his ongoing fundraising

Because I got a huge amount of advice and guidance from the Pregnancy Sickness Support charity we wanted to do something to give something back to the charity for all their help. So last summer, Brendan competed in the Stowe Triathlon (on the hottest day of the year!) and raised a large sum thanks to sponsorship from family, friends and colleagues, in aid of PSS. I'm very proud of my husband and want to thank him very much. I couldn't have got through it without him, he is my Hero.” Says Victoria.

What a great man, worthy of Hero status in the eyes of hyperemesis gravidarum suffers around the globe.

Brendan Cronin raising money for Pregnancy Sickness Support

Brendan Cronin setting a great example to all the HG dad survivors by raising money for Pregnancy Sickness Support in a triathlon

You can now download an HG Hero certificate to give to your own Heroes who have helped you through your pregnancy. Don't forget to give them to your GP or Midwife if they were great and let them know how they made a difference... encouraging them with a positive message of thanks and gratitude will soon spread amongst their colleagues and encourage them to want to do the best for their patients.

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22Apr 14

Survive with a little help from my friends

In the third of my series about how you can make a difference to hyperemesis sufferers now and of the future I will talk about peer support systems for hyperemesis gravidarum.

Way back in my first pregnancy, bar a yahoo group which seemed to be fizzling out, there was no peer support system. Facebook was in it's infancy, although there was a small American group I joined called “Hyperemesis Gravidarum, when it's more than morning sickness”. The lack of support was perhaps the hardest aspect of the pregnancy, apart from the obvious constant vomiting. No one around me seemed to understand apart from my husband who was witnessing it first hand and was as equally scared, confused and alone.

Fast forward to 3 years ago when I was trying again for my third pregnancy and things were changing. Simultaneously I found out about Pregnancy Sickness Support and a UK Facebook group popped up, there were six of us and we grew week on week (it now numbers over 480 members). Numbers were exchanged on private messages so that we could text each other too. It made a phenomenal difference. I was no longer all alone and had a group of women who knew exactly what I was going through... all those mixed emotions of wanting a baby but being terrified of the pregnancy, of wanting to enjoy it but hating every moment.

Facebook support seemed great and I was in mutually supportive relationships with three women that summer... or so I thought. One of them turned out to be a girl, not with hyperemesis gravidarum, but with mental illness in the form of Munchausen By Internet (MBI). Now not wishing to do a post specifically about that, although perhaps I will one day soon, I am telling you this because it explains my motivation to set up a solid, safe and effective peer support network to prevent the months and months of intense support we are all more than happy to provide being wasted on people with ulterior motives.

From this spawned the Pregnancy Sickness Support Network we have today. Women who have been through hyperemesis are able to register to support others, receive training (including on MBI, recognising it and handling it), are fully insured and get ongoing support from the Charity. Women needing support are assessed and matched with supporters who are experienced, knowledgeable and usually geographically close. It's brilliant and it works.

Barr a cure for hyperemesis, an effective support network is probably the second most important development for HG sufferers around the globe. It is the most pro-active part of the Hyperemesis Improvement Movement because we don't need doctors to listen to us, or relatives to shut up about ginger or celebrities to stop glowing in order for us to support each other. Medication can only help so much but support from an army of comrades can get you through the long lonely months of suffering.

Facebook groups are all well and good but my goodness there are dramas and blow ups and women in severe need of support are overshadowed by women who demand attention regardless of need. A group of over 480 women is simply too big to offer meaningful and effective support and too often I witness appalling “advice” being doled out in worryingly persuasive comments. Or I see doctors correct and cautious prescriptions being challenged by women who hold no responsibility and know nothing of contraindications or pre-existing conditions.

So my call to action in this post is this: Get on and volunteer for the cause, support women suffering now and if you are one of those suffering then accept the support we offer... we've been there, we want to hold your hand and text you at night and again in the morning to let you know you are not alone. We can sympathise about the revolting saliva and help you see the funny side of the ginger biscuit comments. We can share our survivor strength and share our wisdom about speaking to doctors. And when you have made it through and have your precious baby in your arms, then you too can reach out to others and support them.

If you don't feel like you have time to commit to formal volunteering at the moment then how about getting involved on the forums where you can offer support in an informal way. Both PSS and the HER foundation have online forums to get involved in. If you are suffering then I would strongly urge you to seek support and advice via these rather than on Facebook. They are moderated by experienced and trained volunteers and you can make online “friendships” safe in the knowledge they've weeded out the trolls and fakes.

In the last year alone the UK Network has grown rapidly although we still have massive gaps in geographical areas and over stretched volunteers. My hope is that 5 years from now we will have volunteers in every city, town and village in the UK... there are certainly sufferers in all of them so I for one think it's an achievable goal... with a little help from my friends?

 

Here is how you can volunteer:

In the UK or Ireland apply through the Pregnancy Sickness Support website here

In Netherlands get in touch with Rosa Overbosch via her website

For pretty much the rest of the world get in touch with the Hyperemesis Education and Research Foundation.  

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I have been a member on the Facebook group for around 18 months now and during HG I was a regular poster. I think it had around 120 members when I joined so it has grown rapidly in a short space of time. When the PSS forum was first created I didn't really understand the need for it but now on the other side of HG and a spectator to the Facebook group I completely understand it. I work in mental health and would be very interested if in the future you did a blog on your experience of MBI. Well done on such a great blog and your hard work :) x
Louise , 25th April 2014

Spewing Mummy replies...

Thanks for the comment and your perspective. I too was very wary of a PSS forum as I didn't see the need and didn't think it would be used as much.  but have been proved well and truly wrong. It now provides a really safe and supportive environment for sufferers. Facebook really isn't the place for seeking support with medical conditions like this. I will write about Munchausen By Internet at some point as I've written the PSS training for it so would be easy to transfer. It's not just MBI cases though on Facebook. As you've probably seen over the last year there have been a couple of cases where she clearly exists but massively over-dramatises or perhaps suffers hyperchondria or something. Both times have been very distressing for the other women in the group! x

10Apr 14

Lets SHOUT About Hyperemesis Gravidarum

Following on from my last post about fundraising I want to discuss how you can get involved with raising awareness about hyperemesis so that our daughters and granddaughters don't have to suffer the same injustices, ignorant comments and inhumane treatment that so many of our generation have.

I can't, however, let this post go by without mentioning the terribly sad loss of Peaches Geldof, who set an example as one of the only celebrities to have suffered hyperemesis gravidarum and to have spoken out publicly about her experience, which was so similar to all of ours despite being wealthy and famous. She experienced the same prejudices and poor treatment that so many of us have and went months without proper diagnosis. I'm so proud that the website I helped develop whilst suffering myself actually helped her during her first pregnancy and that she was able to print info for her healthcare providers to improve her treatment. She has set an example for others to speak out and she took time to promote Pregnancy Sickness Support through her social media feeds, giving us a much needed boost at the time. I had contact with her to discuss patronage for the charity and although unable to accept at the time she had already helped in her own way and gave a voice to hyperemesis sufferers across the country.

Now, moving on to what YOU can do to raise awareness and help with the Hyperemesis Improvement Movement...

First of all, volunteer. Either for Pregnancy Sickness Support in the UK and Ireland or the HER foundation in pretty much the rest of the world. They can offer guidance about raising awareness in your local area and resources for you to use. Hold a Big Brew event for International Hyperemesis Awareness Day, May 15th and print out information for your guests.

By volunteering for the charity there may also be opportunities to get involved with conferences, research and interaction with local universities and midwifery colleges. Leaflets and posters are available from the charity to distribute at local hospitals and doctors surgeries.

In terms of media awareness, there is the option of talking to local papers and magazines... But BE CAREFUL. They want an angle and they aren't afraid to twist what you say pretty much any which way they want. A friend of mine told her local paper about her horrendous hyperemesis which resulted in a termination in an effort to raise awareness. They sold it onto the national tabloids and she was literally hounded for the next week having “aborted due to morning sickness”. She received hate mail from pro-lifers and her life was made a misery.

A good option if you are already a volunteer for PSS is to make sure you have the “happy to talk to media” button ticked in your profile on the website. A lot of magazines and papers get in touch with the charity to source case studies for articles and we are able to check the angle and quality of press before putting them in touch. In fact, I was contact just over a week ago about an opportunity to have hyperemesis featured in a Discovery Channel documentary. I have spoken at length to the producer and am confident this will be a great thing for the cause. They are looking for a woman currently suffering in the second trimester. Full details and how to get in touch are below.

Please note that this is completely unrelated to Spewing Mummy or my role as a Trustee for Pregnancy Sickness Support and I have no responsibility for the project and outcomes. I am simply sharing the advert to a relevant audience.

 

Are you expecting a baby? Is there such a thing as a 'straight forward' or 'easy' pregnancy? Do you think you're having – or you're likely to have- an exceptionally interesting or unusual pregnancy?

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents very unusual challenges.

Cineflix Productions have been commissioned by Discovery to make 6 x 60 minute episodes on the subject of pregnancy (our working title is “The Pregnancy Project”).

We're looking for mums-to-be from all over the world, who are juggling the usual excitement and anxiety of a typical pregnancy, with an unusual situation or condition.

If you're pregnant in an extraordinary situation (for example, you're acting as a surrogate for a family member or having a baby as an older mother), you're experiencing pregnancy with a pre-existing condition of your own (such as dwarfism or visual impairment) or if you have a condition brought on by your pregnancy (like extreme cravings, orhyperemesis gravidarum) - then we'd love to talk to you.

We're also looking for mums-to-be who might have previously been told they were unlikely to conceive due to unusual gynaecology.

From sharing the news with your loved ones, to medical appointments and baby showers – right up to the big day itself - we want to explore the realities – the highs and lows, the excitement and the inevitable anxieties that being an extraordinary pregnant mum brings, and help you share your pregnancy story.

If you'd be interested in an informal chat with a member of The Pregnancy Project production team, please email us on thepregnancyproject@cineflix.com 

or call 0203 179 0099– we'd love to talk to you.

(And of course – congratulations on your pregnancy!)

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Had a second Skype interview for this programme today (just tweeted you actually) - I am not ill enough! Woohoo! I am one of the lucky ones who gets better in the second trimester. Keep up the good work x x x
Jade Vernon, 10th April 2014

08Apr 14

All aboard

Since my post about making your kids proud and using your awful run in with hyperemesis as a force for change and improvement, for our daughters and granddaughters, I've had lots of people ask how they can get involved, raise awareness and make a difference.

Well there are three main facets to the hyperemesis improvement movement (ooh, I like that!). They are money, awareness and peer support systems. I'm going to cover all three of these and how you can make a difference in depth over the next few days, starting with money. It's an ugly subject, but that's never stopped me before...

Pregnancy Sickness Support is the main UK charity working to improve care for women with Hyperemesis and as a trustee for the charity I can assure you that we desperately need funds. We don't receive any formal funding whatsoever and rely entirely on donations. The HER Foundation in America is in a similar situation. And that's where you lot come in... Get fundraising, get donating and let's give the improvement movement a boost.

Don't know where to start? Well, if organising fundraising events or doing personal challenges isn't your cup of tea then perhaps you could spare a one off donation or a small amount each week or month via direct debit. Click here for a link to Virgin MoneyGiving where you can set up a direct debit which automatically collects gift aid where eligible. As we saw recently with the incredible fundraising effort for Breast Cancer Research, if everyone gives a little it really adds up! Now they made millions over a few days, but if each of my readers in one month gave £1 we would have around £5,000! If you all gave £3 then in one month you would have funded the entire support network for a whole year!

But for those of you who are up for raising bigger amounts with events or challenges then PSS has just launched an event for Hyperemesis Awareness Day on 15th May which you can all get involved in... The Big Brew... organise a tea and cake morning, invite family, friends, collegues, mums from baby groups, random strangers off the street, staff from your GP surgery or local maternity ward and anyone else you can think of, ply them with tea, coffee and cake, tell them about PSS and ask for donations... simples! Awareness and money in one morning (or afternoon/evening or whenever you can manage it). There are even posters, invites, a top tips sheet and other resources available for you to make the day go smoothly. What's your excuse eh? (Okay so mine is the fact that I'll be living in a tent on a stone age living skills centre somewhere in the depth of the Colorado Rockies... beat that!)

For those of you in America you could get involved in the 5k run that the HER Foundation has organised at the end of May. I'm hoping to be in Washington for it myself this year... I even bought to trainers last week to run in although am yet to run anywhere other than after my, annoyingly fast, toddler.

Other things you can do is hold car boot sales, dinner with friends, eBay auctions, personal challenges such as climbing a mountain/running/cycling/sky diving and any other crazy ass thing you can think of. You can even raise money for PSS when you shop online by going to easyfundraising.com first or givingabit.com and by recycling your old mobile and ink cartridges - perhaps your office might be happy to have a box to collect ink cartridges for us?

Another option is to ask for the gift of donations in leu of birth/christening presents as we all know how bombarded with "stuff" you can be when a baby is born, ask for donations instead and if you still end up with mountains of junk then Ebay for PSS!

Without money, charities like PSS and HER cannot even survive, let alone thrive. In fact our support network in the UK only has enough money to continue for another two years with our current funds. Yet we help thousands of women every year, actually, every month! If we all gave a little, just a pound or two then we could easily fund the network for years to come. Money on top of that will allow for research, conferences, education packages, leaflets and information packs to name but a little of what money can buy.

Basically, what I'm getting at is... Put your money where your mouth is. If you suffered hyperemesis and want care and treatment to be better for those in the future then get fundraising or donating... nothings going to happen without money... as sad as that may be, it's fact. Lets get the Hyperemesis Improvement Movement off the ground.

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03Apr 14

Educating Midwives... An Article I'm Proud of

Click here for the article or read on for the story behind it...

A few months ago I was tweeted a link to a MIDIRS (a midwifery journal) article about hyperemesis. It was on the front page and was questioning whether hyperemesis was a “spiritual” condition. The article, which discussed one case study of a women whom personally I would not have considered an “HG” patient at all, claimed that as hyperemesis is neither psyhological nor biological (not sure how she claimed that as there is plenty of evidence of it's biological cause), it must therefore be “spiritual”. I was vexed.

I was still vexed when I happened to be at the Royal College of Midwives conference representing Pregnancy Sickness Support and I noticed that MIDIRS, along with their offensive front cover had a stall a few rows down from us. Duly Amanda (my colleague and co-author on the book) marched over and explained to the poor women representing the publication why said article was so offensive and frankly ridiculous.

The following Monday the editor was in touch asking me to write an article for them. A “patient perspective and how the midwife can help” angle was decided upon and I got writing. I submitted and was met with an incredible amount of edits. Honestly, it needed them... I had written from the soul and with far too much emotion and defensiveness (an inherent quality of many an HG survivor, I find). Edit I did and massively improved the article. The editor and I stood our ground over a couple of points I considered crucial and common ground was found. It also lead me to question my closeness to the subject and prompted my survey back in January.

I am exceedingly pleased with the results and hope that you, my readers, are too. My hope is that every midwife, nurse and doctor that comes into contact with a hyperemesis sufferer will read this and feel inspired to give her the best care possible... so please share the link, as much as you can and lets educate the world...

Click here to access the full text article. Thanks to Essentially MIDIRS for allowing me to share their published article. I look forward to writing for them again.

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As a hcp myself (I'm not a midwife) I know that I take a lot of notice of what's published in my monthly professional magazine. Therefore I am quite shocked an inaccurate article could be published in the first place. As a HG survivor i already know all too well about having to fight a battle with hcp during HG and articles like this really hit home that as a profession poor training really needs to be continually addressed. Well done on your article and I want to thank you for continually being our voice for HG. Personally I could not have got through my HG journey without the HG support group you originally started on facebook x
Louise , 3rd April 2014

Spewing Mummy replies...

Hi Louise,

Thanks for your comment, I too was shocked by the "spiritual cause" article but I feel they redeemed themselves with mine ;)

I'm so glad the support groups helped... peer support is so crucial for this condition, as is educating the professionals! 

We are making progress these days though, putting one foot in front of the other we will one day be at our goal.

Are you volunteering for PSS now? if not it would be great to get you on board!

Caitlin x

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About Me

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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