My HG story: Rachel Stone
I remember looking forward to being pregnant. Enjoying pre-natal swim classes, shopping for maternity wear and enjoying our last holiday as a couple before our son arrived. My pregnancy turned out to be far from that. The reality was many trips to hospital, more IV fluids than I can remember, feeling incredibly isolated, having to resign from a job that Iloved and leaving Australia to live back in the UK.
I took a positive pregnancy test in February 2015. Our baby was planned and Sam and I - both ex-pats from the UK were looking forward to bringing our baby up in Sydney, enjoying the active lifestyle we loved. Work had been very busy in the run-up to finding out I was pregnant. I had been busy booking trips to the US and around Australia where I worked for a large cosmetics brand. I loved my job, I loved the people and part of me was sad that having a baby meant I would have to leave for a while. Little did I know that my last day of work would be in March 2015, only a couple of weeks after I took that positive pregnancy test. I was working at home after a recent work trip when I started to feel unwell. My body hurt and I felt like I was coming down with the flu. I didn't know it yet, but this was the start of HG.
I spent all weekend curled up in bed. I lost my appetite and all the muscles in my body hurt. That feeling didn’t go away and I seemed to only be getting worse, so I visited my GP the following week. He said, "you just have morning sickness, I’ll write you a sick note for the next 2 weeks" and sent me on my way with a prescription for Maxalon (a common anti-nausea medication). I remember thinking, "But this is awful if this is morning sickness - why hasn't anyone ever said how bad it is". Another week went by and I was feeling even worse. I hadn't yet vomited but I felt extreme nausea 24/7. Not waves of nausea that come and go where I could carry on with day-to-day life - but constant nausea - day and night. I resorted to laying absolutely still in bed for around 2-3 weeks, occasionally nibbling dry bread.
Sam and I had booked a holiday for two weeks’ time. I was working in San Francisco for a week and Sam would fly out to join me where we'd booked to stay in Los Angeles for 2 weeks. The trip was creeping closer and closer, but I kept feeling worse with each day. I couldn't walk from our bedroom upstairs to our bathroom downstairs by this point and was using a bowl beside the bed as a bedpan (much to Sam's delight!) Sam took me back to the doctor the next day. I was told to cancel my work trip and holiday. My doctor signed me off work for a month and gave me a prescription for Ondansetron. Ondansetron (or Zofran), is a medication wafer used to prevent nausea and vomiting caused by chemotherapy and radiation therapy. At this point I still didn’t know I had HG - I didn’t know what it was. HG had not been discussed with my doctors and although this medication seemed extreme, I hoped it would at least allow me to get out of bed and function. 24 hours later and I was in A&E at the Royal Randwick Hospital. Not only was I feeling horrific I had a rash all over my body. It started at my feet and by midnight it had crept up to my neck, in my ears, and on my face. I was incredibly uncomfortable and scared as I felt my throat swelling up. Sam drove me to A&E at 1 am where the doctors couldn't understand why I was having an allergic reaction. I was having a rare reaction to Ondansetron and was put on IV fluids and antihistamines for the next 12 hours in A&E. At this point I started to feel really concerned about all the medication I was taking while only in the first trimester of my pregnancy. Could antihistamines and medication used by cancer patients really be safe to take when pregnant?
Sam collected me from A&E the next day and I went back home to bed. That's when the vomiting began. The next 3-4 months felt like torture. I vomited all day and night - constantly. I'd vomit violently into my hospital vomit bags - catch my breath with crippling stomach pain and no relief and would vomit again. and again. Some days I only had 4 minutes of ‘rest’ before I was sick again. I would try to suck on ice cubes between being sick for some hydration but then I’d vomit again. I find it hard to describe HG to people who have not experienced it. The only comparison I can make to the feeling is that moment of around 30 seconds before you actually vomit when you’re ill or have car-sickness when you can't move your body, your eye line, you can't talk and you're drooling because you’re concentrating so hard on not being sick. It's that feeling... constantly. For months at a time. There is no relief and It really is pure hell which I’d not wish on anyone.
Poor Sam had the awful job of cleaning up after me. His company had allowed him to work from home and by this point, I had given up fighting HG. I'd go a full week without bathing (I couldn't shower as I couldn't stand up and the water on my body made me vomit). The few times I remember Sam putting me in the bath, I’d vomit all over myself clinging on to the side of the bath crying. My body hurt so badly that I hated any kind of physical touch. I didn't want anyone to touch me or even come near me. Smells were the worst thing in the world. I could smell the SPF in Sam's moisturiser which made me vomit. The smell of the doctor’s perfume in the hospital made me vomit. Every smell of food or drink made me vomit. It sounds absurd but I could smell people walking past our house with a coffee. The truth was... people were probably horrified at the smell of me!
After my second trip to A&E, they told me about the day-stay unit at Royal Randwick hospital. I got to know the doctors and midwives there very well! Heidi was the midwife running the day-stay unit and as much as I didn’t want to visit her every other day, it was so nice to have a midwife who understood HG and would plug me into an IV drip and leave me in peace behind my curtain to hydrate. My mum had flown out from the UK at this point and spent 8 weeks with me, accompanying me to hospital, cooking meals for Sam, and sitting at my hospital bedside. When she flew back to the UK, my dad flew out for another 4 weeks to take over my care. I had moved to the spare bedroom downstairs in my house as I couldn't walk up the stairs anymore. I'd lost so much weight from constantly vomiting and not eating that I had muscle wastage in my legs. I remember laying alone for days in the hospital with an IV in my arm and a vomit bag in hand praying that I’d fall asleep and not wake up.
Sam and I had discussed the idea of termination, but somehow through discussions with doctors and my family, we decided to keep going. I was only 4 months pregnant and the thought of continuing for another 5 months didn’t feel possible. I was so incredibly ill and dehydrated that I thought I was going to die. The reality is that many women used to die of HG before IV fluids were invented.
One of the hardest parts of HG was the lack of understanding. When there's a lack of understanding, there comes a lack of funding and therefore a lack of support. Doctors had laughed at me for not coping with morning sickness. A doctor at the hospital had woken me up one morning and disapprovingly said to me "you know you wouldn't be here if you just drank water". Although friends were sympathetic, I don't think people understood the severity of HG and they probably didn’t know what to say. My dear friends would visit me and would sit with me in silence to keep me company by just holding my hand, and although I felt like awful company – it meant a lot to me. I missed dinners, birthdays, hen-dos, and weddings. I found it easier to close off from the world, not respond to messages or calls, and to lay mute in my hospital bed. I have never felt as depressed and isolated as the 9 months I had HG.
My turning point was when Professor Sandra Lowe at the Royal Randwick Hospital visited me and made a turning point in my treatment plan. She was the first doctor who sat on the end of my bed and held my hand and let Sam and my mum explain how ill I had become. She was incredibly responsive and immediately put an action plan in place for me along with Dr. Amanda Beech - both specialists in HG. She explained I needed to see a physio, dietician, and a phycologist to support me through the rest of my pregnancy.
Amongst the 12 tablets I took each day, steroids were the turning point for me and the only medication my body responded to.
Professor Lowe explained that administering steroids to pregnant women may increase the chances of the baby developing a cleft palate, so whilst it was a risk, it was yet another risk we had to accept and deal with later. The steroids were a game-changer, even after a few hours I sat up in my hospital bed and began craving Coca-Cola. I hadn't asked for any form of food or drink in months, so everyone ran to the vending machine to get me a Coca-Cola. and then another one. The only other relief from the vomiting for me was sleep. I took sleeping tablets day and night so that I was only awake from 1 pm-9 pm, It made it much easier to cope with HG if I didn’t have to be awake to face it. I took steroids until I was 6 months pregnant and slowly weaned from them. I managed to start walking again, bit by bit (and always with a vomit bag in my pocket which I did until the day I gave birth!) I saw a phycologist twice a week for the rest of my pregnancy which was a huge support for me.
When I was 6 months pregnant, we made the decision to move back to the UK to live with family for the remainder of my pregnancy. Looking back now this decision to fly home gave me a short-term goal and a purpose to work towards. The doctors made a plan for 4 weeks of improvement before they would give me the all-clear to fly to the UK. We flew home business class as this allowed me to lie down and sleep – there was no way I could have done the flight sat up. The stopover in Abu Dhabi was awful as I felt so ill. I didn't think I could complete the second leg of the flight and I still don't know how I did it!
The last few months of my pregnancy were hard, I'd left my job, my friends, my house in a city I loved, and I felt like I’d lost myself. Sam's job in the UK was particularly challenging and stressful and we'd moved in with my parents as I still needed full-time care.
HG babies are usually born low-weight and due to my medication, I had to give birth on a ward where my son could be weaned from my medication. When Orson was born a week early, he was 9.4lb (4.3kg) - huge considering he was grown on steroids and Coca-Cola! It was an awful wet, stormy day in England and my labour was a long 48 hours with 2 blood transfusions after I lost consciousness from blood loss. After the birth, a large team of doctors came to my bed to tell me I’d feel rough for a few weeks after a traumatic labour. But I was grinning from ear to ear. I remember saying to them “That wasn’t traumatic, my pregnancy was traumatic. I’ve never felt better!” When they put my son on my chest my only thought was "It's over! I never have to be pregnant ever again!!!". The relief from the nausea was instant after I gave birth, I had forgotten what it had felt like to feel ‘normal’.
Sam, Orson and I are back living in Sydney now. We stayed in the UK for a year until we moved back just after Orson's first birthday. HG has had a huge effect on us - emotionally, financially, and also on my health. HG showed me who my heroes are – my HG heroes – my family, friends, and support network during the hardest time of my life. I try to look for positives in all situations and this experience taught me a resilience I didn't know I had, our relationship took on a level of strength we didn't know we had, and we somehow got to the finish line with our beautiful boy!