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Journey into the world of hyperemesis gravidarum...

Journey into the world of hyperemesis gravidarum

Dr Tony Nicoll of Dundee, Scotland, is my medical HG hero!  He is an extraordinary person and I am delighted that he recently won a gold award in the ‘Outstanding Individual (Non-Clinical)’ category of the NHS Tayside Staff Appreciation and Recognition (STAR) Awards.  I struggle to imagine that there could possibly be a more deserving winner.

 

Dr Nicoll always goes above and beyond to ensure that every patient under his care is thoroughly looked after.  He is an expert in the treatment of HG (hyperemesis gravidarum) – amongst many other things! - and in applying his knowledge he is consistently calm, warm, sympathetic, trustworthy and reassuring.  He truly wants to help hyperemesis sufferers suffer less, and is genuinely concerned for his patients’ physical and emotional well-being.

Without Dr Nicoll’s unfaltering care I am not sure how I would have survived my second pregnancy! 

My First Pregnancy

In 2009 I was pregnant with my first baby and suffering severely with HG. In spite of being completely bed bound with no quality of life and unable to even turn my head or talk without being sick for months on end I was repeatedly told by several medical professionals that my sickness was ‘normal’.  Not one of them checked my urine for ketones or suggested rehydration via IV fluids during the first few months, and the battle at any point for effective medication was pointless and distressing. 

Over and over again I was made to feel guilty for considering any medication during pregnancy – of course I didn’t WANT to have to take medication, but having your body in starvation mode and being unable to do anything but lie still in a dark room battling non-stop intense nausea/vomiting during pregnancy is also not healthy - for you or your baby!  

Those dark months were utter hell, both physically and mentally.  I knew no better so had to accept what I was told and battle on through the torture of 24/7 relentless sickness month after month.  All day every day I would just countdown to when I was asleep as it was the only time I could escape the sickness.  The fact that this is SUPPOSED to be one of a woman’s happiest times of her life makes HG all the harder to deal with, and when most people dismiss your symptoms as ‘morning sickness’, suggesting traditional (and useless!) remedies such as ginger, and crackers, etc. this makes things impossibly worse.  It is NOT ‘acute morning sickness’!  I was SO thirsty, and SO hungry - ALL THE TIME - and yet couldn’t drink or eat a thing, not even water, without throwing up. Even though I wasn’t keeping anything down I would still dry wretch or throw up bile.  With no relief at any point.  It was horrific. 

Duchess of Cambridge

Three years later, when the Duchess of Cambridge fell pregnant for the first time, there were a few intense days when I did many interviews about HG for newspapers and radio stations and, crucially, the volunteer work I do with Pregnancy Sickness Support was also featured on STV news.  It was watching this news article on the TV that helped me realise who I needed to speak to for decent care if I was to face being pregnant again to give Joseph, my first born, a sibling.  My now hero, Dr Tony Nicoll, was featured in the same article giving the medical expert information and was clearly very ‘HG friendly’!  I am not sure my little three year old Theo would be here today if it wasn’t for discovering this amazing doctor.

 

My Second Pregnancy

Seven months after this, I was pregnant for the second time, and the experience could not have been any more different to the first. 

Undoubtedly I was much more knowledgeable myself which helped, but crucially I had the life-saving volunteers at Pregnancy Sickness Support and the remarkable care of Dr Nicoll on my side this time!  I should say AT my side, as they – and he - were there every step of the way. 

It was still a horrendous pregnancy but I got the best possible medical care and thanks to Dr Nicoll and P.S.S. (Pregnancy Sickness Support) I felt significantly less isolated, scared and miserable, and much more believed and understood. 

Most vitally, Dr Nicoll treated my hyperemesis properly with IV fluids and medication from the beginning and therefore minimised the length and intensity of sickness as much as was possible.  He is intelligent and experienced, and was always able to clearly explain everything to me at every stage.

From my pre-pregnancy planning appointments with Dr Nicoll, I could tell he took hyperemesis seriously and didn’t just shrug it off as ‘morning sickness’.  I had taken along a great HG medical protocol written by the brilliant Dr Marjory McLean (another Scottish HG medical hero!) to my pre-pregnancy appointment as I was prepared that the mention of medication just might be shrugged off again - but this was absolutely not the case.  Dr Nicoll knows how to treat HG and it is not with crackers or ginger biscuits!!! 

I was terrified and devastated at the thought of being pregnant and having HG again, especially as it would mean I wouldn’t be able to be a proper mum to my son Joseph for so many months, but Dr Nicoll alleviated a lot of my fears. 

Once the hyperemesis struck he had it arranged that I could go into Ninewells hospital as a day patient for two bags of IV fluid whenever required - and directly, without going through a GP, and there was never a battle for the medication I needed. 

We had a sensible step by step plan set out before pregnancy - and in writing - so I wasn’t left in doubt as to whether I would get the care Dr Nicoll had approved if he happened not to be at the hospital when I needed treatment. 

During my pregnancy he also arranged for extra reassurance scans which were obviously comforting but also provided some much needed, encouraging, positive moments in amidst the torturous sickness! 

He made the hell of HG so much more bearable in so many ways.  To know that you will be taken seriously and treated properly makes such a difference, especially at a time when you are extremely weak and vulnerable.  I know, as a P.S.S. volunteer who has supported others under Dr Nicoll's care, that he has been exceptional with all of them too.  The difference in these ladies, both physically and emotionally, once they are under Tony’s care, is indescribable.

Star Awards

In nominating Dr Nicoll for a STAR award I came to learn that not only is he exceptional at treating hyperemesis gravidarum, he is just simply truly exceptional - in all his fields of work. 

Everyone I have spoken to about him seems to have heard of him and also speak about him in a super hero sort of way! 

Unfortunately great care for hyperemesis is rare, but Dr Nicoll sets the perfect example to others of how to treat those suffering with the condition – with seriousness, compassion, understanding and care.  I really hope Dr Nicoll realises what an impact he has had on my, and my family’s life.  He is so gracious and modest that I’m not sure he will!  Even more so, I hope that other doctors follow his outstanding example.

My Other HG Heroes...

This post was primarily to highlight Dr Nicoll’s amazing work, but, with deep emotion, I must also mention a few more heroes… 

My family (I am so grateful for you) and also friends (all of you who helped and most especially the extreme kindness and compassion from Monika, Ruth and Alexis) who did so much. 

Then there is Caitlin Dean, who runs Pregnancy Sickness Support… an absolute SUPERHERO!  Without Caitlin I am almost certain that I would never have been able to face going through a second pregnancy, and my little Theo would not be here.  I wish I had your intelligence and eloquence to put into words how grateful I and the world of hyperemesis sufferers are for your tireless efforts.  You are truly unique. 

Also, another amaaaaaazing hero - Lyle Brooks in New York, who runs Beyond Morning Sickness.  Once again, I am lost for words as how to describe your caring, hardworking and generous nature, and how grateful the hyperemesis world is for you. 

The amazing Kimber Wakefield MacGibbon who founded the HER Foundation in America as without her website (http://www.hyperemesis.org/)  I don’t know how I would have gotten through my first pregnancy

Lastly, I am sending a huge thank you to all of the Pregnancy Sickness Support volunteers and also previous sufferers from right around the world who supported me through that second pregnancy.  There were so many of you bombarding me with messages of support and I will never forget you doing that!  It meant, and means, so much.  Thank you, all of you HG heroes, from me and my little HG survivors, Joseph and Theo. 

 

"Being able to provide pregnancy care for women and their families is something that I am very proud of and I feel very lucky to be able to be a part of so many life changing moments.

I aim to continue to provide high quality care to women in Tayside and I will do my best to ensure that every pregnant woman that I look after has the best experience possible." - Dr Tony Nicoll


-Dr Tony Nicoll was nominated as an HG Hero by Heather Miranda 


 - To raise money for Pregnancy Sickness Support Heather's son Joseph will be busking on his violin and electric piano in Dundee over the summer. You can support Joseph by following this link and donating what you can http://uk.virginmoneygiving.com/Joseph_PSS

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19Jun 17

THE JOY OF HG

Happy Father's Day!

In celebration of Fathers Day yesterday i asked Ian to write a guest blog to raise awareness of what it is like for husbands and partners supporting their wives/partners through HG.... Here's to the Joy of HG 

Finding out your partner is pregnant is one of the most incredible things that can happen to you. 

I found myself overjoyed and excited at the prospect of my then fiancé and soon to be wife growing our child within her. The expected ongoing joy and excitement of 9 months of waiting for the new baby boy or girl to arrive. My partner glowing with pregnancy and happy to be carrying our child, although evidently concerned with the arrival process! 

Sadly none of this was to be the case beyond a couple of weeks. 

Around week 4 we were pregnant by week 6 she was vomiting endlessly. Unable to hold down toast or even water. I witnessed her glow diminish and her shrink in size. Spending my time concerned for her wellbeing instead of excited for our child’s arrival.  I effectively nursed her when I was home, and during the week when I was at work I worried incessantly as to whether she was ok, had she managed to eat or drink.  Had she managed to go an hour without vomiting? 

Being called to be told she is in hospital and on a drip to try and re-hydrate her is not a nice call to take. This call multiple times is horrendous. 

She probably should have been in hospital more but stubbornly refused to go. 

Most women seem to enlarge when pregnant. This is natural; there is an additional person in there! Not my wife, she continued to fade away. She was able to do less and less and I worried more and more for her and the baby.  Maintaining a positive and strong stance in front of her whilst internally being frightened is not fun! 

Having no one to engage with about the problem, as no one else could possibly understand the situation meant I had to deal with all of the challenges and worries on my own internally. 

There was no free time. I either worried and looked after her, or worried and strived to get home to look after her. 

 The pregnancy could not pass quick enough.  The sooner the baby arrived the sooner my wife could recover.  Why was she so ill?  No one seemed to have an answer other than ginger biscuits or some other ridiculous old wives tale. 

Fortunately she did survive, we had a beautiful daughter and I could finally relax, as she regained strength and became herself again. 

The zombie was once again being replaced by my vibrant and feisty wife. 

 So we decided to have another child.  It couldn’t be as bad surely!  Of course it could, and it was.  Fortunately this time the Dr’s understood the condition and she was prescribed some heavy hitting ant-sickness drugs.  This did not prevent her from once again withering down and ending up in hospital. 

When not in hospital struggling to cope with our eldest daughter, as activity was too much and she was unable to cook as it made her violently ill. 

I once again had to deal with the emotional challenge of supporting a very ill wife whilst at home and away for prolonged periods.  Dealing with a situation by phone, when all I wanted to do was be at home. 

Again I had no one to talk too as still no one else could understand my situation and my emotional struggle. 

My wife was not to see the struggle I went through as I did not want her to worry, when the priority was keeping her as well as possible and positive. 

Fortunately the second time she had support from mental health midwives and PSS which greatly helped her, and for that I am grateful. 

Perhaps husbands need to acknowledge they need support as well, not all the time but every now and then just some re-assurance so you can maintain the positive persona for your sick partner. 

I did not share my feelings with my partner so as not to upset her, and get her down.  This perhaps was a mistake. My wife being an emotional creature felt more alone without my feelings and fears, and as if she was not understood.  I as a very much task, not emotional person find it hard to engage emotionally and see the positive show as primary.  What is best is communication, understanding and support. 

Hopefully in the future more men will realise this and reach out to potential support groups and not see it as a failing or weakness.  It takes strength to engage, and open up with your problems.  Women understand that some men may not be emotional creatures and therefore what you perceive as simple sharing of feelings will ease a problem is something which is beyond your task orientated partner. 

Communicate and support for each other is key!  Pregnancy I’m afraid for the HG suffering couple is not pleasant.  It is something to deal with and defeat prior to the joy of a new born child and the recovery of the partner you love.

For further information and support please contact Pregnancy Sickness Support by Phone: 02476382020 or Email: support@pregnancysicknesssupport.org.uk

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For those of you new to my blog I'm currently undertaking a PhD in Health Studies focusing on hyperemesis gravidarum to help further the international research efforts. PhD's are fairly long and arduous processes and a hell of a lot slower than my usual pace of churning out surveys of women's experiences and so on. But, the research produced is of a far higher quality and therefore has a much greater impact on the world of evidence based medicine. 

As part of my PhD I'm conducting a Narrative research project and after a long process of developing the protocol, applying for ethical approval and piloting it... then having to apply for an adjustment of ethics. Anyway, its now ready! so if you are interested in taking part please re on.....

 

The Impact of Hyperemesis Gravidarum on Women's Reproductive Lives - A Narrative Research Project

Have you experienced a pregnancy affected by Hyperemesis Gravidarum (HG)? Do you want to tell your story for research?

HG researcher, Caitlin Dean, in conjunction with Plymouth University, is recruiting women to take part in a project to explore women’s experience of HG and how it has impacted their reproductive lives. If you have had one or more pregnancies affected by HG you may be eligible to take part.

We are looking for women willing to share their whole HG story, from beginning to end including any potential affects in the future. You can either write or type your story in your own time or you can tell the researcher, Caitlin, your story over the phone, via skype or face-to-face (depending on location). If you choose to tell your story by phone, skype or face-to-face it would be recorded and transcribed. After this Caitlin may get in touch with you again to clarify parts of your story or ask you to expand on aspects. For full details of what is involved please click here.

To be able to take part you need to live in the UK and be over 18 years old.

We want to ensure that women from all sorts of backgrounds are represented and that the women interviewed represent the diversity of pregnant women in Britain today. To ensure this we are asking women interested in taking part to fill in an online form giving us some details about themselves.

Hopefully everyone who wants to take part will be able to but if a lot of women apply then we may not be able to include everyone in the research. We will contact you within one week to let you know if you are able to take part.

Please click here to apply to participate in this research.

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Questions with Caitlin - Questions & Research

Here is my next vlog in the 'Questions with Caitlin' series all about the questions i have received and the research available to answer them

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Fund Hyperemesis Research

The Book

Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

The Kids Book

Hoe to be an HG Hero by Caitlin Dean

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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