Partner story: Chelsea Harrington
Our journey with HG began three years before our first daughter was born. I say ‘we’ (without trying to downplay the obvious significant physical challenges my partner faced) because anyone who has watched HG torture their partner knows that it is not just them who is affected by this awful condition.
After a year of Intrauterine Insemination (IUI) without success, my partner, Hayley developed a severe case of Ovarian Hyperstimulation Syndrome (OHSS). This resulted in a three-week hospital stay with her unable to move without vomiting or significant pain. She was too frail to walk ten steps to the bathroom without assistance from a loss in muscle tone. While she looked six months pregnant, the rest of her body was failing her. Eventually, with all other options exhausted, she had emergency surgery to relieve abdominal fluid and check for organ damage caused by the OHSS. By chance, it was this surgery that led us to a diagnosis that IVF would be our only option.
We were nervous but excited to begin the IVF process in the new year. We thought we had just tackled the hardest part of our journey with her OHSS - after all, our Fertility Specialist assured us that with age on our (and our sperm donor’s) side, there would be no reason why we wouldn’t have a baby by the end of the year.
This is where our HG journey begins...
The morning of that first positive test was a moment we will never forget. Our first cycle had worked! We had a baby on the way. Within the day, we had calculated baby’s due date, written a shortlist of names and had many conversations about the adventures we’d have and things we’d need to purchase. When Hayley began to feel nauseous before hitting four weeks gestation and developed what we later knew to be HG by six weeks, it was almost a relief that the pregnancy was progressing the way it should. We lived in our little bubble for three and a half more weeks before out of the blue, we went from watching television on the couch to suddenly driving to A&E, terrified that a bleed was signifying the end. Within hours, it was confirmed that HCG had dropped and a scan showed no living baby.
Our wonderful Fertility Nurse, Annie reassured us that loss was common and that it wouldn’t mean that we won’t get to take home a baby of our own. We made a plan forward and headed back to try again. After you have experienced a loss, nothing is the same. The next cycle gave us another positive pregnancy test. It also brought with it some anxiety as well as excitement that this was surely ‘the one’. We’d had our ‘one in four’ miscarriages now so surely that was the end of our bad luck. Yet again, HG hit and while driving to our friends’ wedding, Hayley felt that something wasn’t right. She was feeling ‘better’ that day and we were relieved for the long car trip. We now know it was a sign that her hormone levels had started to shift. Before we had arrived at the wedding, the bleeding had begun. Within hours, our second miscarriage was confirmed.
After that, each test brought anxiety and crippling fear rather than excitement. The next three cycles each resulted in pregnancies followed by loss. Five from five. We had lost all hope.
After becoming as educated as we could on all things fertility and recurrent loss, we moved to a new specialist and had more progress in the first appointment with him than we had in all the time we’d seen our previous specialist. He agreed to run the tests we suggested, including a Uterine Natural Killer Cell biopsy. A condition that I had become certain was the cause of our losses. As suspected, Hayley’s uNKC levels were quite literally off the chart.
Within three months, pregnancy number six had begun. This time it felt different. Hayley was very sick from very early on. Again, there was bleeding. Many times. Each time, we were sure we knew what this meant. Surprisingly, weekly scans revealed that one baby from our two transferred embryos was still hanging on.
Hayley continued to get sicker and the feeling of reassurance that came from this ‘morning sickness’ quickly changed to fear as she reached the HG ‘death zone’ of seven to 11 weeks gestation. I can remember at one point staying up all night researching drugs and natural therapies thinking there had to be something more someone could do to ‘fix’ how unwell she was. Hayley was struggling mentally with not being able to get out of bed unless it was to be sick. Her head felt fuzzy and she couldn’t read a book, watch television or look at her phone. She could only lay in bed and wait for human interaction when her mum would visit or when I got home from work. I can’t imagine how debilitating that must have felt. Along with the mental side effects of HG, her muscles had started to waste away and she would feel even more deflated when she stepped on the scales to see that even though she may have managed to keep something down that day, she was still losing weight. Despite her small frame, she had lost 14kg by 11 weeks gestation. I remember trying desperately to reassure Hayley that people feel better by 12 weeks and that she was so close to that now. All while knowing that HG didn’t always work that way. By 14 weeks, I could feel that she was starting to give up. It felt like this baby who we so desperately wanted was trying to kill her. Adding Restavit to her cocktail of antiemetics was a real game-changer. Hayley started sleeping better and waking up less nauseous.
Thankfully, by 18 weeks, she started to feel better. I couldn’t wipe the smile off my face seeing her starting to eat some small meals, sitting outside in the sun and even attempting to work for a few hours a day. Mentally, she was a new person! As the HG backed off, the anxiety didn’t. Sickness in pregnancy had become our indicator that everything was okay. While we were elated that Hayley was beginning to manage the day (until about 4pm when her HG would rear its ugly head until around midnight), if our baby was quiet or Hayley hadn’t felt her move for a while, panic would quickly set in. While her HG had settled by the end of the second trimester, she continued to experience what perhaps would be a regular pregnant person’s morning sickness until our daughter was born.
Our HG survivor, Harper was born completely healthy at 40+4 gestation and 3.5kg. She survived on frozen coke, hot chips and cocktail of medications.
12 months after her birth, after spending weeks researching each fertility and HG drug required for a frozen embryo transfer (FET) and high-risk HG pregnancy while breastfeeding, we returned to the clinic to begin trying for a sibling for Harper.
Round seven saw yet another pregnancy. After weeks of bleeding and inconclusive and then positive scans, we were told the last of the two embryos we had transferred’s heart had stopped beating. Our sixth loss. This loss was a little further along than the others and HG had well and truly hit before our miscarriage was confirmed. HG is debilitating enough but HG with a toddler was exhausting for us both. HG with a toddler only to end in loss was devastating. We were so grateful for our little girl. The day we arrived home from the final scan was the day Harper started walking. She was beaming with excitement and so were we. Sometimes it’s as though little people just know how to make the world okay again.
After a stimulation cycle to create more embryos and then our first failed FET, we were again successful. Pregnancy number eight.
At just three weeks and two days gestation (five days following transfer), Hayley was feeling nauseous. We were cautiously optimistic and nervous about the potential for another missed or spontaneous miscarriage or a HG pregnancy with a toddler. Our six-week scan felt like a lifetime away in those early days. When the day finally arrived, we were hopeful, terrified and anxious to learn that we were expecting twins!
After a number of admissions for dehydration and bleeding, Hayley was diagnosed with hyperthyroidism as well as HG. Hyperthyroidism had been caused by her high HCG (which had risen to over six times the upper range for her gestation for each week of the first trimester). This helped to explain why her HG kicked in much earlier and her extreme lethargy. It was difficult for all of us trying to juggle a high-risk twin pregnancy and a toddler. We found that setting up activity boxes that only came out when Hayley was on her own or needed them the most were really helpful. We were very lucky to have such a placid, empathetic toddler who took pride in caring for her mum as much as exploring her new toys. She became an expert in getting a water bottle, towel and bucket at the first sign of a cough and quickly modelled me rubbing Hayley’s back when she was sick, asking, “Are you okay, mummy? Water?” at all the right times. It was beautiful and heartbreaking all at once.
We were thankful that after the first trimester ended, Hayley’s HG and hyperthyroidism both settled to a more tolerable level. All in all, this had been the most calm, non-eventful pregnancy of them all, with weekly and then fortnightly scans keeping our anxiety at bay. Each scan showed our two babies growing well, though one was measuring a little smaller with a velamentous cord insertion and growth discordance.
Things were going smoothly with only some random episodes of Braxton Hicks needing investigation due to their persistence when one evening, at exactly 28 weeks gestation, Hayley noticed persistent Braxton Hicks once again followed by some dull lower back pain. She took herself back to the hospital for a quick check while I stayed home with our sleeping toddler. Within minutes of her arriving, there were concerns that she may have been experiencing actual contractions. By morning, a scan to check on the babies found that she was 3cm dilated. Within minutes, Harper was thrown into the car to daycare while I drove anxiously to our larger public hospital where Hayley was now being transferred. When I arrived, the doctors rushed around Hayley discussing plans to stop or slow her labour. Despite their best efforts, these babies had decided that they were coming. Hayley was urgently transferred once again - this time to our closest NICU hospital two hours from home. I collected Harper from daycare, threw a clothes basket of clothes in the car and drove to The Mercy for Women Hospital. Shortly after arriving, we were both prepped for theatre and before we knew it, our twins were born. Max and Imogen were born just 18 hours after Hayley drove herself to hospital, fully expecting to be sent home within the hour. The relief from HG wasn’t as instant this time, though this was likely due to the medications given during and following Hayley’s caesarean.
The first few weeks of NICU were the most difficult weeks we’ve ever experienced. Thanks to members of the HG Australia support group, we had mental and practical support to help us through. A beautiful fellow HG-warrior friend offered her breast pump and showered us with gifts, others offered a listening ear or experience with NICU as a parent or paediatric nurse. We couldn’t be more thankful for the family that is our online community.
Harper is now a bubbly, empathic, beautiful two-year-old and Max and Imogen are now nineteen-weeks-old (seven-weeks corrected) and thriving at home after a 10.5-week hospital stay. They have their premmie issues to work through, but we couldn’t be more thankful for the treatment they’ve received so far.
While HG is only part of our story, it binds so many of our experiences together. From the sharing of tips and tricks to get all of us through the day to the support we received following our losses and the birth of our children. I can’t thank them enough. HG warriors just get it. Pregnancy isn’t a straight forward, wonderful time for everyone. It can be filled with challenges and complications and sometimes that overrides the excitement we wish we could feel.
My message to anyone supporting someone through HG is:
Be patient. Know that it will end. For now, she needs understanding of how HG affects her daily life, someone to take over the running of the household and care of other children
Know that she’d rather be at work than suffer through HG. It’s not a cop-out. It’s survival.
Be as involved in the pregnancy as you’re both comfortable with. Know her team and her medications and advocate hard! Be her voice when she is too unwell and never give up until you know you’ve exhausted all options
Don’t expect her to return to her usual self once HG settles during or following her pregnancy. Aversions can linger and her body needs time to recover mentally and physically. PND and PTSD following HG are also not uncommon and can present themselves in ways you (and she) may never have expected