HG Heroes

In recognition of the fact that HG doesn't just affect the pregnant woman but often her partner, previous children and anyone else caring for her, I'm going to do a series of HG Heroes. Starting with my own I will be posting pictures and stories of all the wonderful people who have helped women through their worst moments. I also hope it will offer strength and support to those suffering at the moment.

HG Heroes can be partners, friends and relatives but I would also like to recognise all the brilliant doctors, midwives, nurses and employers who have help women with HG.

If you have an HG Hero you would like me to post about then please contact me using the form on the right.

So, my biggest HG hero has got to be my wonderful husband Rob. He has been by my side for literally thousands of vomits, willing to support me regardless. Asking him to support me through a third round of HG was hard but he was therefore me at every turn.

He is particularly skilled at emptying sick buckets.

My HG has had silver linings for Rob as he is now a very hands-on, confident dad and he admits that may not have been the case had I not have suffered so badly, rendering him a single dad during the subsequent pregnancies. It has also given our marriage an unimaginable strength which we are both very proud of.

Now he supports me in my ongoing mission to raise the profile of the condition and my work with PSS despite it taking up vast amounts of family time. I know how proud he is of my work and I know I couldn't do any of it if it wasn't for him.

He's handsome too isn't he? :)

Hyperemesis Gravidarum - how nurses and midwives can help

During a wonderful twitter chat last week by @WeMidwives, part of the We Nurses community a number of the midwives involved highlighted that the difference between normal “morning sickness” and hyperemesis gravidarum (HG) wasn't clear and they didn't feel confident in identifying the point at which treatment is indicated. Further, they didn't feel confident in knowing how best to treat and support a woman with HG.

Therefore, in addition to the information currently available on the Pregnancy Sickness Support website, I though I would clear the matter up a little and this post is particularly for all the nurses and midwives who are coming into daily contact with women suffering HG.

The difference between the two

Morning sickness (a misnomer as it is rarely confined to pre-midday!) is a normal part of pregnancy, effecting 80% of women. It's not particularly nice but it's not that bad either, a bit of a queasy feeling sporadically during the day or night, particularly if you haven't eaten. Perhaps throwing up sometimes and then feeling a bit better. Believe it or not most women actually look forward to this normal part of pregnancy as a sort of “right of passage”. It's an indication and reminder of the pregnancy which she has planned and is oh so excited about and generally considered a sign of a progressing pregnancy.

Normal pregnancy sickness is usually over by 12 weeks and can be eased by self help techniques such as rest and eating little and often and possibly by wearing acupressure bands and taking a capsule of ginger extract, 1000mg per day.

You are unlikely to lose significant weight with normal pregnancy sickness and it won't be interfering with your ability to go to work or look after your household. It may to the sufferer feel awful but ultimately it's not that bad in the scheme of things and we all know it's worth it in the end.

Most women with normal pregnancy sickness don't moan that much about it, are unlikely to present to a GP or in hospital and won't suffer significant emotional upset or long term complications from it.

Pregnancy sickness is on a spectrum from the very mild to the life threatening and somewhere around the moderate-severe end of Nausea and Vomiting in Pregnancy (NVP), before it can be fully considered HG, it needs treatment.

If the nausea is so constant that she is unable to eat and drink normally then she needs treatment. If she is having time off work and is house or bed bound then she needs treatment.

In many cases the first line treatment of antihistamine (ie. Cyclizine or Promethazine) plus vitamin B6 will do the trick and enable her to get on top of eating and drinking again and prevent further deterioration. Now this is important: The VAST majority of women, particularly if the pregnancy was planned, do NOT want to take medication in pregnancy. Fears over safety and the impact on the baby will be overwhelming her as she takes that first tablet. It is the role of the nurse or midwife to reassure her and comfort her with the mountains of evidence for their safety. It is NOT the role of the nurse or midwife to add to her stress and worry with comments such as “well you really shouldn't take anything in pregnancy, we don't know if it's safe”. If you personally don't know if it is safe then do some research. Midwifery and nursing are evidence based professions and all qualified staff should be more than capable of accessing and reviewing the relevant literature.

Moving on - When severe NVP gets worse and a woman is dehydrated then she has HG and probably needs admission for fluids and IV anti-emetics. Criteria to look for include: weight loss greater then 5% of pre-pregnancy weight; dehydration and starvation either with ketosis or fluid intake less than 500ml/24hrs; quality of life severely affected ie. Unable to get out of bed, wash, watch TV, read etc.

If a woman has HG then she needs treatment as not treating can lead to serious complications for both mum and baby. Woman should be reassured that in a risk verses benefit are assessed, taking the medication is the safer option.

There are a number of treatment options to move on from the first line of antihistamine/B6 and adding in rather than switching meds is generally more effective as various anti-emetics work in different ways. More information about treatments are available here.

Supporting a woman with HG

So how can nurses and midwives support patients with this horrid condition? Well, believing her will get you off to a good start. See my previous post on “what not to say to a woman with HG”. In particular, healthcare professionals (HCP's) should avoid suggestions of alternative therapies. Not only do many of them lack an evidence base, or indeed safety data, but you can rest assured that by the time a woman is presenting with HG she will have tried almost all of them and she will have heard of the rest. Suggesting them will undermine her confidence in your ability as a nurse/midwife and will add to her feelings of isolation by highlighting that you don't know what she is going through. If she is still throwing up on anti-emetics then believe me, ginger isn't going to make the blindest bit of difference - plus it burns on the way back out! Suggestions of ginger and hypnosis should be left to the mother-in-laws and the second cousins once removed. And speaking of those “helpful” relatives and friends, you could always print off this leaflet for when they visit.

Advocacy: During my nurse training I was taught that the nurse should be an advocate for the patient who is unable to express themselves. Many nurses and midwives are actually intimidated by doctors and consultants and I've never really understood why. The doctors themselves admit they don't, indeed can't, know everything about everything and the vast majority are genuinely pleased if a nurse has a thorough knowledge of a subject. Our roles are different and most doctors really respect the professional knowledge of the nurses and midwives they proudly call colleagues. So speak up! Explain that she is suffering and desperate. Explain that she isn't making herself sick and doesn't just want drugs but that she feels like she's been poisoned and cannot move without retching. That she tried for this baby and wants it more than anything but she feels like she is dying and is scared. Suggest that if they aren't sure of the best way forward then they could contact PSS. Question why they aren't moving her on to the next level of treatment - they may have a good reason and you could then relay that to the patient, or perhaps they simply aren't aware of the use of ondansetron or steroids in HG management. 

Working in partnership: Many women feel utterly out of control when they have HG and that's scary. By helping women to understand their condition better and self manage in partnership with their HCP's you give her back some control over her life and you make your job easier too - Bingo! So how do you do that? First of all, listen to what does and doesn't work for her. Next, talk to her about the treatment plan, which medication has been prescribed and why, what the options are if those don't work and so on.

Plan the discharge with her and she is less likely to come back in! Teaching a woman to monitor her own fluid balance intake/output at home is easy enough, as is monitoring her own ketones at home (NB. She shouldn't have to do either of these for herself in hospital - that's your job and she needs to rest while she can). You can also come up with a care plan for self monitoring and knowing when to come back in for more fluids or to step up medication. Direct access to a ward is easy to arrange too and in some areas IV at home is possible to arrange for her. Call the GP to ensure he/she is on board with the treatment plan.

Practical tips for the ward environment: Ideally get her a side room, away from where food is served and not overlooking the smoking area. If the choice is ward bay with crying babies, side room by the kitchen or side room overlooking the smoking area then explain that, apologise for the lack of good option and ask which she would prefer. Do not wear perfume to work... but you already know that. Ensure a good stack of clean vomit bowls and try to check regularly to remove used ones. Be gentle with her battered veins. Where possible try to get her food when she wants it, I know it's not terribly practical on a busy ward but asking a care assistant to make a slice of toast could make a big difference - Or perhaps her visitor could use the ward kitchen? Try to get the drugs to her on time, again I know it's tricky but keeping blood levels stable with the anti-emetics is key to management. Perhaps any oral meds could be kept as patient own so she can take them exactly when she need them without relying on overstretched staff.

Finally, support her: She is lonely and miserable, she feels guilty that she isn't enjoying the pregnancy and is probably fantasising about miscarriage or termination, which adds to her guilt and worry. What can you do? Refer her to PSS for peer support. There is a forum she can go on to “meet” other sufferers. If you are concerned she is depressed, which is not a cause of HG but a common complication of it, (clearly 24/7 nausea and vomiting for weeks will make you depressed!), then refer for counselling or to the peri-natal mental health team in you area if you have one. She may be encouraged by a scan to see the baby so if that can be arranged then do.

I know HG is a frustrating condition to manage for staff and sometime the women come in and seem so miserable and unwilling to help themselves. It's because they are utterly exhausted, scared, depressed and feeling guilty, hormonal, and constantly nauseous. Lots of midwives and nurses I've spoken to over the years express exacerbation at feeling like they can't help but actually, just being empathetic and supportive of a woman with HG can make the most incredible difference to her miserable experience. To have just one supportive nurse or midwife is wonderful, to have a whole ward full... well sadly, to date, that's unheard of... hopefully not for much longer though!

Please share this blog with your colleagues and THANK YOU for reading it.

10 tips to help a friend with hyperemesis gravidarum

The reality is that no one intentionally hurts or upsets a friend who is suffering - they simply don't realise the impact their innocent, well meaning suggestions can have. Often people feel very out of their depth trying to help a friend who is suffering in a way they can't personally imagine. And why should we be able to understand an experience which we haven't been through? Some things we can imagine are universally horrendous for anyone (deaths of love ones and so on) but of ailments, which we have no personal experience... how are we meant to know?

The hip pain at night during pregnancy was awful but I honestly can't imagine what symphysis pubis dysfunction (SPD) is like because I didn't have it. To have that pain constantly! The GP who gave me such excellent and compassionate care never had any pregnancy sickness but she did have terrible SPD and described it as “every step was agony, like walking on broken glass, and no-one understood”.

Had I not have suffered HG myself I would have been the first to suggest the alternative remedies for pregnancy sickness, SPD and any other pregnancy aliment which I would assume myself to be an expert on simply from having been pregnant myself. Now I try to relay my experience with one misunderstood condition and apply similar sensitivity to other people's misunderstood conditions... SPD, migraine, myalgic encephalomyelitis, fibromyalgia, depression and so on.

Anyway... rather off track there!

Down to the business of how you can actually help a friend with HG. Here are my 10 top tips:

1. Just listen and believe her. Unfortunately no suggestions you make are going to miraculously cure the HG and not suggesting them won't make her think you don't care. Quite the opposite... by not suggesting those things she will enjoy your company and support all the more.
2. Offer practical support such as making some meals for the freezer that her partner will appreciate too... but PLEASE don't put any garlic in it... her partner won't appreciate relegation to the spare room for stinking!
3. If she already has kids then perhaps take them out for the day? She'll be comforted to know they are having fun with friends.
4. Going to the supermarket? Text to ask if she needs any essentials... bread, milk etc. If you drop them over put them actually in the fridge for her. A lot of women with HG can't stand the smell of the fridge.
5. Be sensitive to how strong her sense of smell is. It's not just strong but it's warped too so once pleasant smells are absolutely revolting. Therefore, if visiting, avoid strong perfume, eating garlic the night before, smoking prior to visit and so on. As nice as flowers are she is likely not able to tolerate the smell.
6. Talking about gifts - chocolates are a no no unless she has specified wanting them. A magazine would be better, perhaps rather than a pregnancy or girly one how about something that interests her like countryside, knitting, photography etc. Explain that while you appreciate she can't do those things at the moment you hoped that she would be able to flick through the pictures during her better moments and distract her a little.
7. While you are there, nip to the loo and give it a clean. Don't tell her you're going to do that or ask if she wants you to... who on earth would say “yes please, if you don't mind cleaning the splatters of vomit off the inside of my toilet I'd really appreciate it”?
8. Send her texts to check up on her and let her know you are thinking of her but don’t' get huffy if she doesn't reply all the time or with any speed. Phone screen induced vomiting is pretty standard but so too is the loneliness and depression which makes you want to shut off from the whole world... especially those who have never suffered. Your texts will mean more to her than you can imagine.
9. If her partner works and isn't able to attend doctor appointments and you are able to go with her then great... advocate for her. If she can't speak for herself then speak up on her behalf... tell the doctor or midwife how it really is... ie. She's not being sick in a normal way 2-3 times a day, it's relentless, x-y times per day... she may not have the strength herself.
10. If she is worried about prescribed meds then do a bit of research to reassure her of the safety - Contact charity Pregnancy Sickness Support for more info.

I realise a lot of those things are quite demanding of your time and energy and perhaps difficult to fit into a busy life with children and work. A lot of it will depend on how good a friend you are and the personal circumstances - a sister is clearly going to do more than a work colleague. But if you aim for the above and don't make any of the comments in the last post then you're on your way to winning the award for Best Friend of The Year!

Regardless of how bad the woman is suffering and to be honest what the condition is (I'm sure the above would apply to plenty of acute and chronic illnesses: cancer; flu; depression; broken limbs etc.) ultimately a bit of compassion goes a long way and is often appreciated all the more if it's acknowledged that you can't actually imagine the suffering they are experiencing but want to help if you can.

For further information about how to help a friend or relative suffering click here.

What not to say to a woman with hyperemesis gravidarum

Whilst browsing facebook this morning in bed - moments after waking up as one does - I came across a blog post a friend had shared by Pregnant Chicken, about what NOT to say to a pregnant lady. It was hilarious and cheered me up from my “I have to get up now” blues. And I though I ought to expand on the theme. So in addition to the general pregnancy comment no-no's on Pregnant Chicken's blog here are the things not to say to a women with Hyperemesis Gravidarum (or just bad pregnancy sickness for that matter):

1. “Have you tried ginger”... this has got to be the all time greatest thing NOT to say. Research, by a colleague of mine Margaret O'Hara, has found that all women with any level of pregnancy sickness know about the “taking ginger” remedy. What most people don't know (although plenty of veteran HG sufferers do) is that the only form of ginger which has found to be in any way helpful is as a capsule, 1000mg per day and then it is only helpful for mild queasiness. Ginger biscuits, ginger ale, ginger tea, ginger ice lolly's... it's all old wives tales. Do you really think a woman who is on powerful anti-emetics and IV fluids could really have avoided all that suffering if she had only tried a bit of ginger?
2. “Oh I had that, but I still went to work and got on with life”. Well then you didn't have HG so shut up... like comparing a twisted ankle to a broken leg.
3. “Think positively and get some fresh air”... By saying this it implies that it is all in her mind and she is causing her own suffering. It's a terribly cruel thing to say and a sure fired way to lose a friend and possibly get a fat lip.
4. “Well at least you can get pregnant... you should be grateful for that”. We know and we are. Pointing it out just adds to the guilt the woman is already inevitably experiencing due to feeling negative towards the pregnancy and for “not feeling grateful”. It cuts deep and the pain lasts. Plenty of women with HG have even been through the pain of experiencing both and are pregnant thanks to IVF so the hurt for them is all the more.
5. “I loved every moment of pregnancy, it's such a special time, creating life, glowing blah blah blah blah”. Well bully for you and thanks for rubbing my nose in my misery!
6. “Is it safe to be taking those drugs? Won't they harm the baby?”. No woman actually wants to take medication in pregnancy. We all (well most) go into pregnancy wanting to be natural earth mothers, eating healthy and avoiding all potential harm but sadly some women can not survive pregnancy without medication. In the past, before the invention of modern medicine, women would simply die. Often without knowing why as symptoms would kill her before a pregnancy was confirmed or even suspected. Women with HG taking medication think dozens of times everyday about the safety of the medications, questioning if they really need them and if the baby will be okay but the reality is the drugs are prescribed by a doctor and given because they are NEEDED. They are ultimately much safer then not taking them. Further, the effects of severe dehydration, a baby bathed in ketones and a malnourished mum are hardly good. To add to her concern and worry and to make her feel like she needs to justify her condition is wrong and actually really inappropriate. If a pregnant woman was having an asthma attack would you question if the inhaler was safe? No you'd be pumping away worried that she may die without it! If you genuinely are concerned about the safety of the medications then do your own research via the PSS site and HER Foundation, don't question the sick person that barely has the strength to talk let alone argue!

And here are some things you can, and indeed should, say to a woman suffering with the extreme end of the pregnancy sickness spectrum:

1. “How can I help? Would you like me to clean/cook/do some washing/take the kids out for a bit etc etc?” Try to be of practical help so she can rest.
2. “How can I reduce your loneliness?” send a text as often as possible to let her know you are thinking of her and there for her. Offer to contact Pregnancy Sickness Support on her behalf to get a support volunteer for her.
3. Defend her to others who may be saying the above... stick up for her, raise awareness that it's not her fault and she isn't doing it to herself. Don't just nod along to gossip about her taking medication or being lazy; be loyal to your friend.

Avoiding the first six comments and doing the last three will not only make the world of difference but it will strengthen a friendship and probably earn you a god parent role!  

Nine month of...

Despite Orla now being over 15 months old and just about walking and talking, my life is still filled with a constant and steady stream of HG. Not because I am suffering - thank goodness - or because I have any long term complications - double thank goodness - but because Pregnancy Sickness Support has grown almost exponentially and managing it consumes vast amounts of my time.

I am NOT complaining... I love it really. At times it seems too much and can be really draining but then I have to pinch myself to check it's all real - because it's AMAZING!

How much has been achieved and how many women we are now helping and supporting! The average week sees 14+ women getting support and being matched with one of our 110+ volunteers to help them get through the long and lonely months of bedbound misery.

This week we are holding a national conference for healthcare professionals in London where the latest research and treatment guidelines will be presented and discussed. It's so exciting that we will be meeting interested midwives and doctors from around the country, and in fact the world, to try to move things forward for sufferers.

But what is more incredible is the work of our dedicated volunteers. The start of August saw the launch of our first ever “Nine Months Of...” campaign. Our volunteers have a target of £9k to raise over the next nine months for PSS by doing individual challenges, which you can read about on the blog www.ninemonthsof.com

For my part, my “non-hg-persona” aka Muma Dean, is blogging recipes weekly for the next nine months. I know that may sound easy, and believe me compared to nine months of pregnancy it really really is. But when I already work around 40 hrs a week for PSS, have three small children, a farm, am doing an online course and planning a trip round the world, just remembering to take photos of my food is hard enough bearing in mind I have to actually cook it first! Anyway, My recipes appear on the blog every Wednesday and the idea is that if you like it and use it you may make a little donation to the cause, which you can do through my BT MyDonate page.

Please head over and check out the blog, our volunteers are all working so hard to promote the campaign and raise the desperately needed funds for the charity so we can continue to help women and educate the professionals.