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As many of you are aware, I suffered with severe Hyperemesis Gravidarum during my pregnancies, a condition which I believe contributed to the miscarriage of our second child. I have been trying for some time to put into words how to describe this condition. I haven’t been able to convey the message I wanted to so I asked Tiffany, a fellow Hyperemesis Gravidarum Survivor, to help me out. Tiffany is incredible – not only is she an amazing survivor, she now helps as many women as she can and is an active member in our Hyperemesis Survivors group on Facebook. Tiffany is often the first to offer words of support and encouragement and after reading her story, I have a whole new level of respect for this woman.
Hyperemesis is hard for our partners as well, often they are left feeling helpless and don’t understand what we are going through. My gorgeous partner Steve has written A Husband’s Guide to Hyperemesis to share his experience and what he see’s as being important for the men in our lives to know.
Here is Tiffany’s story. I hope it offers some insight into the severity of Hyperemesis Gravidarum.
Morning sickness and Hyperemesis Gravidarum are not the same thing.
I keep seeing articles everywhere about Princess Kate being pregnant again and having “severe morning sickness”. It drives me crazy.
Kate does not have morning sickness – she has Hyperemesis Gravidarum (HG). HG is not morning sickness. Yes it is a pregnancy condition that involves vomiting and nausea but that is where the comparisons end.
Hyperemesis Gravidarum is by definition severe and un-retractable nausea and vomiting in pregnancy that causes dehydration that often requires IV fluids, malnutrition which can cause damage to organs and multiple deficiencies. It is a serious illness that can cause permanent damage to both mother and baby. Before IV fluids it directly killed about 10% of sufferers. Even now many sufferers are dismissed as having just morning sickness and given an array of morning sickness tips even by medical professionals. Often diagnosis only happens after repeated hospital admissions for fluids.
Please stop calling HG morning sickness as that is an insult to those who have endured HG.
HG is a condition that affects a small percentage of pregnancies – statistics suggest it is somewhere below 5%. HG pregnancies have a high incidence of complications and terminations (even of wanted babies as people cannot cope with the HG and the implications it has on their whole life). HG takes a toll mentally, physically and financially. It is a severe and chronic condition that impacts family and friends who watch helplessly as their loved one suffers.
Most HG sufferers cannot work (during their pregnancy) and there are mounting medical bills and expensive medications to attempt to treat the symptoms. Drugs like Ondansetron which is an anti-nausea medication, often given to chemotherapy patients (but not on the PBS for HG), can help some ladies but there is a huge expense along with a lot of judgment from others for taking medications during pregnancy.
Sufferers often find that symptoms do not ease at all till around week 20 – that does not mean you feel well again- for many it means being able to tolerate and keep down fluids and food enough to barely function – still battling with 24/7 nausea (the like of which most people only experience briefly during bouts of food poisoning or gastro except with HG this can last all pregnancy – imagine having gastro nausea and vomiting for 9 months (with no relief) and you may begin to understand how tormenting HG really is.
My HG is severe- it is a living hell.
I began vomiting at 3 weeks before the tests would even tell me I was pregnant. At first I thought I had gastro even though hubby and I had been trying and wanting to have a baby.
Weeks 7-19 for me include vomiting 100+ times a-day, vomiting bile and my own saliva…. I could not keep down any food or fluids from week 7-19. My first trip to hospital at the beginning of week 7 was because I was so dehydrated I nearly passed out.
The triage nurse took one look at me and admitted me right away. I was sent home the following day, which was a Friday and ended up back at the hospital Monday Morning severely dehydrated again – this time I was hospitalized for 8 days. They had me on around the clock fluids and checking ketones every bathroom trip. I was already badly malnourished and had high ketones the entire time.
I began this pregnancy overweight at 80kgs which was a blessing as at the height of my illness.
Every time I tried to even take a sip of water or even a tiny ice chip to dampen my mouth I would vomit for 2 hours after. When I went home at week 9 they thought they had my HG under control with medications. I was taking Zofran wafers (at the time they cost $10 a tablet) and other medications. I could still barely keep down anything and even the smell of most things would cause me to vomit.
The Zofran stopped working for me before the end of week 9 and I was back to feeling dehydrated very quickly. I had 2 ambulance rides to hospital over weeks 9 and 10. Each time I was admitted quickly and given fluids and then admitted overnight then sent home in the morning.
Just before week 10 after one of the overnight stays I returned home for under 2 hours and began vomiting blood and bile and some phlegmy green stuff that I later found was stomach lining. I took the vomit dish with me and went back to emergency. The triage nurse rolled her eyes at me and began to dismiss my symptoms as mere morning sickness and then I showed her the vomit.
At that stage the look on her face changed to shock and she called a colleague and rushed out the door to take me through. I was admitted again. The following day I had a visit from an OBGYN they had called in and then they said that my pregnancy was too high risk for this hospital to manage and I had to be transferred.
It was Queen’s Birthday Public Holiday Monday of 2009 and I was transferred by ambulance to another hospital better able to manage my condition (I was 10 weeks pregnant). My chosen OBGYN visited me and I was then admitted to the critical care ward.
Women like me risk organ failure to have a baby – I was in critical care (yet the morning sickness tips from all continued).
I learnt how strong the will to survive can be during those weeks I would be in hospital over 10 weeks not including labour. During my 9 week stay in critical care I required TPN and IV fluids and vitamins (via IV and injections)- had 4+ injections a day and central lines through my jugular to keep my baby and I alive. I required blood tests every couple of days and blood glucose tests multiple times a day.
Multiple medications that I hated having to take but it was a battle to survive yet my HG was medication resistant meaning the meds did not help me at all. I felt like a pin cushion.
During my critical care stay I they tried all the medications some were class C- a couple were even untested for pregnancy but they were still worth a try because my HG was so severe I had deficiencies that were dangerous in pretty much everything.
At week 12 I had lost a lot of weight and they were now weighing me daily and recording it in my charts. I was running out of veins for drips to go into and my drips were occluding very soon after they were inserted and my nutrient levels were all dangerously low.
My OBGYN at some point in weeks 10-12 had come to talk and told me I needed specialists to care for me as in all his years he had never seen a case of HG like mine and he was at a loss at what to do for me.
He found a maternal and foetal medicine specialist and a liver and kidney specialist who visited me a number of times a week to monitor all my levels. I had jaundice and they were really worried. I was told I may have kidney damage or being at risk of liver or kidney failure.
My skin and the whites of my eyes were bright yellow at this stage, my cheeks were sunken and I looked like a terminally ill patient- I know this because that was what strangers who saw me asked me often. The shocked look when I told them “no not cancer I am pregnant” was one of disbelief.
Just trying to talk caused me to vomit. I could smell the food cart as it came off the lift half a floor away and would run to the ensuite and stuff towels along the gaps in the door where I would stay for the entire meal time still able to smell the food that I so desperately wanted to be able to eat to nourish me and my growing baby- yet even the dampened smell of it would have me vomiting violently over and over till my entire body ached. There were times where death would have felt like a blessing in those dark days.
I had veins collapsing as they had had drip fluids run too many times in such a short time so they had to find other ways to give me the life giving fluids.
Gastro-nasal tubes were inserted – twice in 2 days- this is a traumatic experience when you are wide awake and having tubes inserted – it is uncomfortable and there are many breaks while you vomit and choke (I have feeling nausea just writing about this). Both times the Dr. left the room and I had vomited the tubes back up in under 10 minutes. They needed to get my ketones from malnutrition under control and I had to have TPN to administer.
The next thing they tried was PICC line as my veins could not handle any more drips. I was taken to Intensive care where they set up a sterile environment and gave me a local anaesthetic and a sedative and told me I had to stay super still so they could insert the PICC line. This is a thin flexible tube the is inserted in the bend of the arm and then threaded through a vein un into the main vein and ending just near the heart. The bigger veins are more able to handle the TPN and fluids, which can cause damage to smaller veins and capillaries.
Unfortunately the PICC line gave me chest pains and had to be removed under 6 hours after insertion. At this stage my doctors were at a loss and I was taken off all IV while they tried to figure it out. I was still only 12 weeks pregnant and after 2 days when they weighed me I had lost 30kgs from my pre pregnancy weight. This was about 35% of my total pre pregnancy body weight. I also showed the first signs of Wernicke’s encephalopathy and required daily injections of thiamine, my vitamins were all depleted and my digestive system had pretty much shut down as it had nothing to process.
I was risking organ failure and death if they did not find a solution. My doctors were discussing what to do that could save me and still not harm my much wanted baby.
My doctors decided the only choice left was to insert a central line. This is usually done in surgery but this carries a lot of risks for baby. I had to have this inserted in intensive care while wide awake with just a dose of local anesthetic – that experience will haunt me all my days as I felt, not pain, but certainly discomfort as they cut into my jugular to insert tubes – I had to stay still as these sit around 1cm from your heart.
I had no choice as I desperately wanted to keep my baby and wanted her to be healthy and these tubes were my lifelines.
The Central line worked and finally they were able to give me fluids and TNP. I had these for the remaining weeks in hospital till my HG settled a little at week 19 – enough to be able to tolerate bland foods and fluids enough to keep my baby and I alive. I was finally allowed home by week 20 – still vomiting often a few times a day and still with 24/7 nausea.
HG is a traumatic experience- a chronic and debilitating condition. There is none of the joy and glowing pregnancy that people talk about. Morning sickness tips do not help HG – they serve only to frustrate and anger mums going through this terrible and debilitating illness.
They still do not know the cause of HG but one thing is for certain- HG is not morning sickness.
I am still battling with the after effects of my HG (including PTSD and severe reflux) and my little girl is 5 years old now. Long-term impacts of HG include depression and multiple health issues. My husband also bears the psychological scars from our HG experience. It was traumatic and life changing. Our daughter will be an only child because of it.
If anyone thinks they (or someone they know) may have HG there are support groups of Facebook and this is a good place to find information: https://www.helpher.org/
Please share this post so we can spread the word that Hyperemesis Gravidarum is not just morning sickness, it is a very real and debilitating condition. Leave your comments below to offer support and encouragement or to tell us a little about your story.