Tag Archives: hyperemesis

20 May 2014

It has taken a while but my body finally seems to be getting used to our two little toxwins! I don't feel amazing but I am so, so much better than I was - the difference is night and day! After my fifth hospital admission for IV I wrote a letter to my GP asking to be referred to a different hospital and sent another letter to the lead midwife at the Southern General documenting my reasons for requesting the transfer. It wasn't a complaints' letter so much as an appeal to the senior members of the maternity team to prioritise a reassessment of their hyperemesis policies in the light of nationwide advances in the treatment being made available to sufferers. I explained that in late 2013 a leading obstetrics consultant from Ayrshire, Dr Marjorey MacLean, successfully petitioned the Scottish government for a change in hospital policy regarding hyperemesis and a legally binding commitment has now been made to institute a mandatory minimum of one hyperemesis specialist in every maternity unit in Scotland - as well as setting up a Scottish information and support network for sufferers and their carers. The legislation has not yet been processed, (this will probably take a couple of years), but it is coming. I detailed some of the facts and figures associated with the condition, including the high incidence of therapeutic terminations and the long term implications of PTSD. I pointed out that while there is only one British charity seeking to raise the profile of the condition, it was now attracting support from well-regarded public personalities who had suffered hyperemesis and were so dismayed by the lack of treatment available that they have made it part of their life's mission to effect a change. I suggested that rather than play catch up post-legislation that Glasgow's leading maternity hospital should follow Ayrshire's lead by pre-empting the new guidelines and opening an outpatient clinic where sufferers could come on a daily/weekly/as and when necessary basis for IV and that this would not only put them in line with the most forward thinking and compassionate practitioners in the country but it would simultaneously cut the cost of inpatient treatment, ease unnecessary suffering and potentially save the lives of countless unborn babies. Of course, I didn't expect a positive response or even a response at all, but I felt that I had to do something to try and help the women who will suffer in my wake and, as an un-empowered minion of the state, a letter was the only weapon in my arsenal. Imagine my surprise when, yesterday, I received a reply, that was not only apologetic in tenor but included the following commitment: 'In conjunction with one of our consultants we are now looking to set up a process whereby women can come in at day time and be replenished of fluids with a hope of a return home later that same day.' I am so proud - the toxwins have taken their first ever stand for a more fair, equitable world from the womb and they have had a small but immensely worthy degree of success! Go the toxwins! (Their sneaky Mummy has furnished Dr Marjorey MacLean from Ayrshire - the driving force in Scotland for change - with a copy of this commitment and a suggestion that her expertise regarding the condition, in conjunction with her experience of setting up outpatient facilities in her area, may be of invaluable assistance to the Southern General at this time - I have passed on the particulars of the person who made the pledge so that Dr MacLean can offer her services as a mentor... exerting clout by proxy 101).

So, moving swiftly past my 6th hospital admission two days ago for a frighteningly painful bowel impaction, (brought on by prolonged dehydration), and leaving aside the matter of my 3rd urinary tract infection, what is it like to harbour the toxwins in their 19th week? They will be 5 months old, (20 weeks), on Sunday and since the majority of twins are born by week 37 and the remainder induced by week 38, (because the placenta starts to fail thereafter and this can lead to terrible complications including still birth), we are officially a minimum of half way through! Isn't that crazy?! My experience thus far hasn't been entirely typical so I was very excited, last night, to have itchy feet and painful indigestion - I was so proud of my 'normal' pregnancy complaints that Archie couldn't help but laugh and it was lovely. It was a laugh, full of affection, that said 'I remember this kooky, nut bag - she's the woman I married' - and it made me realise how dreadful it has been for him to watch me this past 4 1/2 months. Forget the fact that his workload has gone through the roof, (12hr night and day shifts, accepting every offer of overtime to pay off the IVF, cooking, doing the laundry, the dishes, shopping, walking the dog, spending every second week sitting by a hospital bed... and having to constantly reassure me that the torment will end and the babies will be OK), he has also been helpless... and helplessness, in the face of watching someone you love suffer, is about as close to that suffering as a person can get. To those of you who have been following this blog, it will come as no surprise that he has taken it all in his considerable stride - but just because something ceases to surprise doesn't make it any the less amazing. Hyperemesis has taken me to some unimaginably dark places and brought me to the brink of thoughts that, thanks to Archie, I never voiced or actioned - he believed I could survive, so I found a way to be the woman he believed I could be. It would seem that being loved by someone you respect and adore gifts you unimaginable strength - letting him down wasn't an option but, if he hadn't loved me and if I didn't thrive on that love, things could have been very different. Me and the toxwins have a lot be grateful for... (and just in case you're about to puke over the sickly sweet perfection of it all, some of this insight was garnered in the pursuit of screaming meaningless profanities at one another while I writhed in a pool of snot and vomit on the bathroom floor trying to rip my own head off... the devil is in the detail - but to the bigger picture, the spoils).

As one of the luckier hyperemesis sufferers I have been able to tolerate very dry solids like toast, crackers and biscuits from about week 8 or 9 which means that I haven't been starving, just horribly dehydrated. In fact, since my pre-pregnancy diet was a super healthy feast of fruit, veg, soup and yoghurt - and for the past two months I have only been able to eat carbohydrates - I feel positively roly poly by comparison. Of course, I am now also harbouring two five month old babies, not to mention a bust that is just that, fit to bust - I don't look like a cartoon character so much as a caricature of a cartoon character. For some women bigger breasts are probably an advantage of pregnancy - me, I have all the appeal of a badly designed buoyancy aid. I have never had a singleton pregnancy, so I have no way of comparing how it feels to carry two rather than one but I'm pretty full - from hip to hip and up to my rib cage there's nothing but baby. I've read that twins play with each other in the womb, poking one another through the placentas and squabbling over whose foot is in whose ear - I like to think that they're friends already. I am desperate to see them at our 20 week scan on Thursday - I want to know that they're OK - I sometimes feel like I've let them down by providing such a lousy, dehydrated environment, riddled with infection and impaction - but I take heart from what I've read about the parasitically resilient qualities of babies in the womb. Both placentas are anterior, meaning that they are fixed to the front of my womb rather than the back, which has the effect of cushioning the babies' movement. This is neither unusual nor problematic, it just means that I'm not getting a lot by way of reassurance from being able to feel them - in fact it is debatable whether I have felt them yet at all. I will try and post again after our scan on Thursday, (when I will hopefully be able to report that the toxwins are in tip top working order). All being well I will soon go from being 'much improved' to 'better' and then I will have to rename them again - from the 'maybe babies' to the 'toxwins' - can Mummy possibly keep pace with the creative demands?

 

Hyperemesis Gravidarum

This post may not be the most coherent because I am still very poorly... and it will likely be disjointed because I only get infrequent periods where I can manage to type - so please forgive the shoddy workmanship. Part of me is reluctant to even try to account for the past two and a half months because I doubt that I have, (or ever will have), the capacity to meaningfully communicate the horror of hyperemesis gravidarum. I also have a visceral dread of provoking any kind of comment, well-meant or otherwise, which purposefully or unintentionally undermines or minimises the magnitude of this God-awful condition. I haven't spoken to, visited, been visited by, texted or emailed even my closest friends for weeks because I have been too sick to use my phone, let alone leave the house. I have never experienced anything like this in my life.

When the nausea started I assumed I had 'morning sickness' - a woefully misleading moniker which the medical profession and relevant literature are striving to re-label as NVP, (Nausea and Vomiting in Pregnancy). NVP can occur any time during the day or night and is experienced to a greater or lesser degree by up to 70-80% of pregnant women. At the milder end of the spectrum some women suffer the occasional bout of temperate nausea, lasting for an hour or two, that may or may not culminate in an episode of vomiting. The further along the spectrum a woman is, the more frequent, more intense, more prolonged and more regular the bouts of nausea become, until, at the far end of the spectrum, it is defined as 'hyperemesis gravidarum' - which amounts to being relentlessly and debilitatingly nauseous 24/7, with some women vomiting up to 40 times a day.

Thankfully I have never reached the heady heights of spewing 40 times a day - I can't even begin to imagine the distress and agony this must cause. By this stage it is not uncommon for a woman's oesophagus to be torn and for her stomach bile to be co-mingling with blood as it burns it's way up her ravaged throat while she clings hopelessly to the toilet bowl and wishes she could die. If, like me, you are fortunate enough to only be vomiting between 5 and 10 times a day your problem will be that, because of the relentless nausea you are unable to bring yourself to drink, since drinking makes you feel like you have been poisoned with antifreeze. If I tell you that the anti-nausea tablets, (anti-emetics), prescribed for this condition are the same ones given to people who are undergoing chemotherapy/radiotherapy for cancer treatment perhaps you can begin to understand the degree of nausea we're talking about - this is not, 'I feel sick but I can manage to potter about and get a few things done' - depending on your walk of life this is the nausea of your first bout of alcohol poisoning, your worst whitey, your most awful episode of food poisoning, your first experience of seasickness - this is 'lie on the floor in a darkened room, moaning and praying for mercy to the God that you don't believe in' nausea. This is nausea, that, unlike a hangover or food poisoning, doesn't go away after eight hours, or two days, or four days or even a week. Can you imagine feeling as sick as you did that day, every day, with no end in sight, for months? Because that's part of the problem - the cause of the condition is not fully understood but what is known is that, unlike mild to moderate NVP, which can be relied upon to go away at about 12 weeks, hyperemesis gravidarum is unlikely to go away before 16 weeks, more likely at 20 weeks but, in some horrendous cases, lasts the whole pregnancy. The fact that sufferers cannot pin point a guaranteed end to the trauma compounds the devastating nature of the condition; especially as so many well-meaning but misinformed bystanders propagate the myth that the suffering will end at 12 weeks, (which is the worst kind of false hope that you can give someone going through this kind of misery). That and telling them to eat ginger... I now have a pathological fear of ginger and will never willingly eat it again, just hearing the word is enough to make me wretch. Telling a person who has hyperemesis to eat ginger is like patching up a cesarean with a bandaid.

So, what help is available? Well, this is where the tragedy is compounded by ignorance and inconsistency. The first line of defence is anti-emetics - drugs which are designed to minimise the suffering of chemotherapy patients. These drugs have not been tested on pregnant women because NO testing is ever conducted on pregnant women so there are NO studies confirming that any of them are 100% safe. Bearing in mind that, before you get pregnant, you will be advised to refrain from ingesting any and all medication that is not absolutely necessary for your survival, it is amazing how quickly, in the face of hyperemesis, the doctors I encountered started pushing anti-emetics. I have since worked out that this is because the only effective alternative is an IV drip and, since, in the UK, these can only be administered in a hospital setting, it is far more expensive to give someone an IV than it is to give them drugs. The drugs are not anecdotally renowned for being particularly effective - in the case of relentless vomiting they can minimise the number of episodes but they do little or nothing to alleviate the actual feeling of being nauseous/poisoned. So while they can help you keep down what you've put down, they can't help you feel well enough to drink in the first place. If you are unwilling to take the anti-emetics then, in Glasgow, you will be treated like a leper. In other parts of the country there are dedicated clinics set up for hyperemesis suffers where women can attend as out-patients and receive IV top ups every day/few days, until the condition passes, but this enlightened effort to 'prevent' suffering rather than only offering IV fluid as a temporary 'cure', when a person is so dehydrated that their body has started producing poisons known as ketones, (and doctors are legally obliged to admit them into hospital and treat them with IV), is only for the fortunate few, living in more humane postcodes. In America, it is normal practice for hyperemesis suffers to have IV drips set up in their own homes and to use them for the duration of the illness.

So, why am I unwilling to take the anti-emetics? Well, it's certainly not because I am on a crusade, or have any desire to influence or imply that anyone, other than me, should be guided by my own judgement. People arrive at the conclusions they come to because of a complex mix of factors which are entirely relevant in the context of their own life and may have absolutely no bearing when it comes to someone else's life. I don't care what other people do in their pregnancies, I have no opinion regarding their choices, I have no desire to sit in judgement on anyone and, in turn, I feel that I should be afforded the same courtesy. I grew up in a household where my mother didn't allow for my sister or I to receive the MMR vaccination because of the risk of autism, (not a decision I would necessarily emulate, since so much more is now known and understood regarding the condition and we are all more informed regarding the risks posed to other people's children by NOT vaccinating our own - but a decision that I would have sympathised with at the time), and I have a sister who has produced 3 beautiful, healthy, bouncing baby girls on nothing but a hypno-birthing course and fresh air. So I have familial benchmarks, just like everyone else and, just like everyone else, I am swayed by their weight. I am also carrying IVF/ICSI babies who have a higher risk of congenital defect simply because of the manner in which they were conceived, in addition, they are twins which heightens the aforementioned risk further and to top it all off, I am 35 which also increases their vulnerability. Add to this the fact that, despite being told by various doctors that these drugs are perfectly safe, I know for a fact, through my research, that at least one of the drugs that British doctors are currently prescribing, (ondansetron - known in America as Zofran), was recently, (September 2013), the subject of a warning issued by the American FDA declaring it unsafe to prescribe during pregnancy since it has now been linked to a higher incidence of cleft palate and congenital heart deformities - which makes me question the currency of the information I am being given. I doubt that any individual doctor is seeking to purposefully mislead the pregnant women in their care but I also doubt that everyone in the field is up to date with their reading. I am also aware that, since no testing is done on pregnant women, all the drugs that are considered safe are only considered safe because no one has spotted any patterns between taking that particular drug and low birth weight/a particular deformity etc. They will remain 'safe' until such a pattern emerges, (which may take years since no one is actually looking for a pattern). I don't tell you these reasons because I think anyone else should embrace them, as I've said before, I am perfectly happy for other people to tread a different path and I don't think that anyone is making superior choices - what I do know is that, if there's one time in your life when you have to do what you think is right, pregnancy is that time. It's finite and irreversible and the only person who is going to persecute you if something goes wrong is yourself - so what earthly choice do have but to follow your instinct?

Hyperemesis occurs in 1-2% of pregnancies; if you are having multiples your risk is increased because, (although they're not sure exactly how), they are fairly sure that it is in some way linked to increased hormones - and obviously, if you're having two or three babies the hormones in your system are doubled or tripled. Last year there were 813,200 births in the UK in total - up to 2% of those would have involved hyperemesis, (16,264). 15% of women suffering from hyperemesis terminate their pregnancies - so, last year, up to 2,500 'wanted' pregnancies were terminated. That's easy to read and dismiss but, just think about it for a moment - even if you do 75% of those poor, tormented women the disservice of blaming a lack of 'backbone', 'moral fibre', 'character', 'fortitude' or try to rationalise that they were suffering from some sort of attention seeking/hysterical psychosis, there is no way that you can possibly write them ALL off as irrational or unbalanced - which means that you're faced with the prospect of imagining just how horrendously, physically sick a rational, sensitive, loving, would-be mother would have to feel to abort her baby. On an intellectual level doctors are aware that this is a horrific condition because they prescribe the same drugs that they give to people who are being poisoned by exposure to radiation. On a therapeutic level, however, they choose to ignore it until the woman's body is literally shutting down because they know that, unlike a person with cancer, she won't die as long as she is rehydrated at the 11th hour and, in this case, prevention is more expensive than offering a short term fix as infrequently as possible. I have been in hospital 4 times so far for IV fluids - and, each time, I have been relentlessly pressured to take anti-emetics. Thankfully, Archie has been sufficiently appalled by the lack of care, which verges, at times, on bullying, that, despite being the least confrontational person in the world, he has stepped in to fight my corner at a time when I have been far too sick to stand up for myself.

I am still horribly unwell every day but at 14 weeks and 4 days I am now a veteran - and although I often wake up crying because I am terrified to face another day of feeling so ill I know that I am luckier than some - as I said, it is a spectrum and there are women out there coping with much worse than me. In a crazy twist of fate, the fact that I have battled severe uni-polar depression for most of my adult life, has actually stood me in good stead - most women suffering from hyperemesis are eventually told that the condition has caused depression, which is no doubt a terrifying diagnosis for a women who has never been depressed and has heard all the horror stories about how ante-natal depression can result in post-natal depression and how post-natal depression can result in being a less than capable mum. I, however, have a distinct advantage - I know that real depression is not linked to circumstance - real depression is when, despite everything in your life being fine, you can't scrape your mood off of the floor... women with hyperemesis aren't depressed - they're miserable for a VERY good reason. If you'd been this sick for this long you'd be miserable too - in fact, you'd have to be mentally ill, of the sadomasochistic variety, to get through this with a smile on your face. That is not to say that these women don't need counselling to help them cope with the despair but there's no need to compound their misery by suggesting that it's a disproportionate reaction to the circumstances and they've somehow lost their mind into the bargain.

I am not going to write about hyperemesis again in any detail because this blog is about a miracle not a tragedy and I am not going to write about my beautiful babies in the same post as I write about this filthy sickness - which means that there probably won't be any further blog entries until I am better, (please let that be sooner rather than later). As I mentioned before, I considered not writing about hyperemesis at all, such is my fear of receiving insensitive feedback - a lot of hyperemesis sufferers develop PTSD when the condition alleviates and many of them are so frightened of the sickness that they never have another baby - but I decided that I owed it to the other women who are suffering now and will continue to suffer to do my bit to raise the profile of the condition. It is an absolute travesty that hyperemesis sufferers are made to feel so helpless and hopeless that over a thousand women terminate their pregnancies every year for the want of IV fluids and a little bit of compassion... a sad and shameful indictment on 21st century Britain.

If you want to find out more about hyperemesis there are two websites with information on the condition, including detailed accounts written by survivors -

www.prenancysicknesssupport.org.uk
www.helpher.org