A Will To Survive: my journey with Hyperemesis Gravidarum
Imagine that you are a first time Mum, newly pregnant and nervous with excitement and anticipation about the adventure ahead. You can’t wait to tell you hubby the exciting news – it’s taken you a while to get pregnant, you have cried over the previous pregnancy loss and so this is even more eagerly awaited. You hope that this is the one.You recall all the advice about morning sickness, what to eat, what to buy and then you start to look for the physical changes. The doctors appointments are booked and the baby book is started.
But this excitement is very short-lived for some Mums-to-be, and for some, the next months become simply about survival. Survival of both you and your unborn baby.
For me, I first started feeling sick around the 5/6 week mark. The initial nausea was manageable and it was all “par-for-the-course”. As a first time Mum, I had no idea what to expect. Everyone else had said that the sickness was a phase and it will pass soon enough, but at what point does the nausea and sickness become a problem? As the days go on however, the nausea turns into sickness – a physical sickness. This starts as vomiting up breakfast, and then snacks. The days start to turn into weeks and the sickness gets worse.
A completely debitilating sickness – the vomiting after every meal becomes the normal. This then progresses swiftly to vomiting after every meal, after every drink, and then, vomiting because your stomach is empty, and then vomiting because you have eaten. And at what point is this considered to be “not normal”.
It was only pointed out to me that my morning sickness was not “normal” after vomiting every 10-15 minutes on a 9 hour flight back from the U.S. The stares and the tuts from passengers around you worrying that you may have an illness – the flight staff who don’t want to get too close and the endless sick bags that had to be taken to the bin.
In the U.K, Hyperemesis Gravidarum is decided by a medical professional. A professional in whom you put your trust and you hope will guide you through the process of pregnancy. It is not an illness that is actively discussed as a possibility in pregnancy by a nurse, midwife or Doctor. It is an illness that just seems to be brushed away, or considered to be an “over-reaction”.
On getting off my flight, I immediately booked an appointment with my Doctor – I was then vomiting endlessly by this point and was driven directly from the airport to the appointment. The doctor assessed me and discussed dehydration and how I needed to increase my fluid levels.
After further discussion, the kind Doctor diagnosed me with Hyperemesis and started me on “Level 1” anti emetics – Cyclizine and told me to give them a try. I had to announce my pregnancy earlier than expected after being rushed to hospital for an emergency scan due to this vomiting “not being normal”.
At my scan, my heart lifted with excitement at being able to see the little “bean” – it made the pregnancy all the more real. However, a week later, I was still vomiting to the point where I now could not keep anything down – my stomach was in knots from not eating and from being so desperately hungry.
Another trip to the Doctor was booked and this time I saw another practitioner; an older gentleman who sat an listened for a while before responding;
“you are sick”
“I need a urine sample”.
I was handed a bottle and staggered to the toilet – at this point I was so weak I needed the wall for support. A few drops was all that was manageable and I returned to the office.
“that’s not enough”
I explained to the Doctor that my sample was all I had as I hadn’t passed urine for most of the previous 24 hours.
“I will do a key-tone test”
In the U.K, Doctors diagnose dehydration through a number of symptoms – those which are able to be physically seen such as a skin pinch test and through described symptoms.
However; in pregnancy, it becomes standard practice to diagnose dehydration through “keytones” – the higher the number in the urine, the more dehydrated you are.
My ketones were within a normal range
“drink some more and try to rest”.
At this point I was unable to function – I had to take sick leave off of work, and became pretty much bed bound. Another week went by and by this point my weight had dropped – whereas by now it should be starting to increase; my weight was decreasing at a rapid rate. I returned to the Doctor and the same procedure was followed – urine sample and ketones. This time however my ketones were increased and I was told I needed an urgent admittance to hospital for fluids due to dehydration.
However, after being assessed in hospital I was deemed to be “ok” as my ketones had increased (thanks to the few sips of sports drink I had on the way). I was given an injection of cyclizine and sent on my way. The Cyclizine however did not work. Instead it made me so woozy that I collapsed down the stairs - cue an ambulance trip to hospital during which I constantly vomited on the journey. Another round of testing and another dismissal.
At this point I felt so completely lost. I started to question whether this was all worth it. Was this normal? Is this what all women went through? When will this end? After being dismissed so quickly from previous Doctors appointments, I was so reluctant to return, but I felt that I was at a point where I needed more help.
I returned to the Doctor and saw the same ageing fellow. He assessed me and said
“this is morning sickness – it will go away”
“as you are making a fuss I will give you a second stage medication”
Ondansetron (Zofran in the states) – an anti emetic used on cancer patients to help them maintain their nausea and sickness during chemotherapy treatments.
“I will give you these, but if you take them your baby will be born with birth defects”.
“you may need to start to consider alternatives”.
Erm – what was I meant to do with this information. Was the Doctor telling me this medication was unsafe? What other alternatives are there?
“abortion – your baby is a parasite”
A parasite – a growing child inside of me is being labelled a parasite. I was so lost and confused at this point I left the office and picked up my prescription.
My head then descended into a collision of questions; Will I get better if I don’t have a pregnancy any more? If I take these what will happen to my baby?
Google is not my friend, but I took what information I could find and made a decision. A choice. After struggling to get pregnant, this baby was a ray of hope. I took the medication. At this point I was now about 14 weeks along (or so I thought) and I had my scan appointment. Filled with nervousness, we went along not knowing what to expect. Trying to drink enough water to fill your bladder but not vomit it back up was not easy!
The sonographer reassured us that all as good with the baby and things were progressing well. However; the baby was measuring smaller than expected and so I was “put back” by 10 days.These words had a devastating effect. That meant that I had to ensure this sickness for 10 days longer. 10 more days added to the already brutal pregnancy.
Discussion naturally turned to medications.
“these drugs will kill your baby”.
So here I was, a first time Mum at a scan where I was told things were progressing well, being told again, that the drugs which allowed me to keep fluids down were going to kill me.
I left feeling so upset, distraught, elated that all was well, but with such a sinking feeling. Was I doing everything right? Could I do more? Do I really need all these tablets?
At around 18/19 weeks pregnant, at one of my regular check-ups, my Midwife turned to me and said “we need to talk”
“you really need to eat more”
“the morning sickness should have gone by now”
My futile attempts to explain to my Midwife that I was doing all I could to eat fell on deaf ears. I was marked down for “mental wellbeing monitoring” and asked to return 2 weeks later. By this point I was barely able to leave the house. Sitting up made me nauseous. Walking made me dizzy. My battle became a sort of reverse eating disorder – I was eating and eating and eating. This was now being followed up by vomiting and incontinence. My stomach muscles had failed. All of the vomiting had worn the skin away inside my throat and I was now vomiting blood. My eyes were sunken and my skin was pale and cracking. There is a running joke within the Hyperemesis community that each pregnancy costs at least one tooth. I had just become a member. My teeth were so caked in bile that despite me trying to brush (whilst vomiting) the bile away, my teeth had decayed and were now crumbling away. My vomit now included bile, blood and bits of teeth – all while I wet myself. Was this all really worth it?
My husband had absolutely no idea what to do. An element of him thought I was overreacting and everyone around us kept saying “its morning sickness – it will pass”. At 22 weeks I still had no bump. Where was this glow that everyone talked about? I was meant to be a radiant expectant Mum basking in the pregnancy glow, going on forest walks and soaking up the sunshine. I could barely make it down the stairs.
My Midwife constantly looked at me with contempt – constantly questioning whether I had an eating disorder and was trying to lose weight so I didn’t get a bump. With a humph I was told to eat what I could, even if it meant that I ate nothing but chips (fries) for my whole pregnancy as it was better than nothing.
I have never felt so alone and so confused – should I try to eat, should I not eat? Am I making this up or is there actually something wrong? My friends alienated me. I was no longer “part of the gang”. No one called, no one text. I was alone.
Throughout this whole experience, I was constantly told to not get excited. I was told that my decision to take medication throughout my pregnancy – to feed my parasite – would end in my child having at least birth defects. By this point I was on a mixture of Cyclizing and Ondansetron – alternated to try to get the best effects of both.
My support network of Doctors and Midwife told me not to expect a baby. And so I didn’t. I had been convinced that I would not leave the hospital with a child. There was no Facebook pregnancy announcement. No baby shower. The few clothes I bought were left in their packaging with receipts for return.
Throughout all of this, I was constantly let down by medical professionals. My now weekly visits to the Doctor to check my ketone levels were met with raised eyebrows and looks questioning my mental stability. I was always “just under” the need for hospital intervention. Looking back now, I should have fought harder, but I had no fight to give. I was weak, dehydrated and malnourished. At every turn I was denied hospital treatment for dehydration.
At 27 weeks I finally “popped”. I felt as if I had a little more energy and was talked into returning to work. I could barely move from my desk. My colleagues who were once friends now whispered about “putting it on” during their coffee breaks. My friends who once rallied around me were no longer “friends”. It was too embarrassing to see the wet patches on my trousers and to be around my vomit smell. My step-daughter likened me to Bella from the Twilight series – malnourished and gaunt with a baby belly.
I had a brief few weeks of sickness relief before the sickness returned. My solace was trying to complete a daily walk with the dog. Each day we would try to go a little further for a little longer. Each Doctors visit, my baby was still called “my parasite”. There were no pregnancy pictures. No updates in the baby book. Why would we want to look back and remember this period when we wouldn’t be coming home with a baby?
My “parasite” had now grown so quickly and sapped so much nutrition from me, my Midwife thought I would go into labour at any point. The bag was packed and the seat in the car whilst my husband and I passed glances, not voicing, but knowingly asking whether it would be needed. The day of labour was all a bit of a blur (another story with a baby nearly being born at the side of the road and a man getting stuck in a lift (elevator!). 2 hours after my waters broke I was in hospital with a baby in my arms. My first born daughter, Evelyn, was born 8lb 3oz at 6.30pm in the evening. As soon as my placenta was delivered my sickness was gone – as quick as that. I have never been more ravenous in my life! I will never forget how good toast, jam and a good cup of English Tea tasted.
At 8pm the nurses changed shifts. The nurse who entered my room at 8.05pm told me “I looked fine” so I could go home. Here I was, a first time Mum, no clue on breast feeding with a baby I was told I wouldn’t have, being told an hour and a half after delivery I could leave to go home with no support network. I found my voice and answered no. Given the previous 9 months trauma, there was absolutely no understanding for my well being and I was going to be discharged just because “I looked fine”. I have now found my voice and I am ready to shout about Hyperemesis Gravidarum.
Now, imagine the story above, with a 2 year old in tow…….according to an article published in J Midwifery Womens Health 2011 Mar; 56(2): 132 – 136 – Hyperemesis re-occurs in 80% of subsequent pregnancies. My daughter, now nearly 5 is sassy, strong, independent and healthy. But, her earlier years have been plagued with febrile seizures. Are these the result of the medication, or is this just genetics? One thing for certain is the unequivocal guilt I feel as a result.
Within the U.K, a HG diagnosis is location dependent. There is an archaic system of diagnosis and treatment which varies wildly. Some women, like me, are offered little to no support with this illness, however in some locations, I.V fluid drip-beds are available to those who can access a walk-in centre.
Hannah Webb is a busy working Mum to 3 crazy kids who loves nothing more than climbing mountains and exploring nature. Activist for Hyperemesis Gradivarum awareness.
Pregnancy Sickness Support - https://www.pregnancysicknesssupport.org.uk/
This is a fantastic information website with online and telephone support for those suffering with pregnancy related illnesses. They provide loads on information including employment help guides for both employees and employers which can be really useful.