Our journey to a baby wasn’t easy. My husband Dan and I had been trying to fall pregnant for around a year when I was diagnosed with Polycystic Ovarian Syndrome (PCOS). I was sent to a fertility specialist (who is now also my obstetrician and one of the kindest, most empathetic doctors I’ve ever met!) and after conducting many tests it was established that I had PCOS and would require fertility assistance to conceive.
After six failed rounds of Clomid and ovulation induction my obstetrician decided that I should undergo a laparoscopy to investigate whether I had any endometriosis. It turned out that I did, so he removed it and advised that he would allow me to do one more round of Clomid before we needed to investigate more invasive reproductive treatments like IVF. Thankfully, on my seventh (and final!) round of Clomid we were blessed to fall pregnant. At my 6 week dating scan we were thrilled to find out that we were expecting not one, but two babies! We couldn’t believe that after trying for so long we had been blessed with twins.
I had terrible morning sickness with the twins and on the days I felt really awful I reminded myself how worth it all the sickness and fatigue would be once I was holding my babies in my arms. All appeared to be going well with my pregnancy until I had my morphology scan (the big one at about the half-way point where they check to make sure all the baby’s bits and pieces are there and working properly). The twins had all the right anatomy with everything in working order, however they were incredibly small, measuring weeks behind. My doctor arranged for me to have another scan around a week later, however the twins hadn’t grown much at all by this point and their abdominal measurements were particularly concerning, as well as the blood flow to one of the twins. It was arranged that I would have to head to Brisbane (around 2 hours from my home in Toowoomba) a few days later to meet with a fetal medicine specialist. I actually found this appointment really positive, as the specialist advised that while the twins were extremely growth restricted, he felt he would be able to get me along to 28-30 weeks when they had a much better chance of survival. That scan was on a Monday, however by the following Sunday I was in hospital.
During the days before I was hospitalized, I kept getting an incredibly painful, stabbing feeling just below my bust and between my shoulder blades. The pain would only come at nighttime and sometimes I would run a bath at 3am just to try to get some relief. I thought what I was experiencing was round ligament pain and that it was more intense because I was pregnant with twins. I was wrong, but we wouldn’t know that for a while longer. In hindsight, I was so naive. The “pregnancy pains” I experienced at this time were not mild cramps but an agonising, stabbing pain. The kind that makes you catch your breath. The kind that made me vomit bile. They weren’t common pregnancy aches, and I would later come to know that this was the upper right quadrant pain caused by HELLP syndrome, a severe variant of preeclampsia.
I ended up going to my local hospital one night due to those pains. I was admitted and stayed on the ward for 4 days… and then I was discharged. Not because my obstetrician was careless (he was very much the opposite) but because I’m a bit of an anomaly. I’m the rarest of the rare (less than 1% of all pregnant women develop HELLP syndrome), the one who isn’t a “textbook case” of something that is, in itself, rare. While my blood pressure was high on admission, it was brought under control once they administered medication and remained stable (for a while, at least). I didn’t have protein in my urine. My liver function was showing as normal. My blood count was fine. I didn’t have swelling or vision disturbances. Other than high blood pressure I had NO other symptoms of HELLP syndrome or preeclampsia at that time other than the excruciating upper right quadrant pain.
My doctor expressed his concern that I was developing preeclampsia, but due to a lack of symptoms he couldn’t clinically diagnose me at that time. He thought the pain I was feeling may have been generated by my liver, but scans of my liver and blood tests revealed that it was functioning normally. Despite this, my doctor said he didn’t like what was going on and felt that “something was brewing”. I remember feeling relieved when he suggested that it could be preeclampsia causing me to be unwell, as I knew a few people who had had it (including my sister) and as far as I knew it was a “mild” complication of pregnancy which could be treated and managed. How wrong I was.
I was discharged from the hospital on the basis that I would be closely monitored, however a scan a few weeks later showed that the blood flow to the twins had become severely restricted, to the point where it looked as though the pregnancy would not be able to continue for much longer.
At 24 weeks exactly I was sent to see an obstetrician in Brisbane (also one of the most beautiful doctors I have met) so he could take over my care and get me as far along in the pregnancy as possible. My new doctor wanted me to be admitted to hospital immediately, however there were no beds available. He told me not to leave Brisbane and that as soon as a bed became available at the hospital I’d be admitted. Luckily, I had a cousin living in Brisbane at the time who we could stay with until a bed at the hospital became available for me. Unfortunately, that very night the pain under my bust came on even more severely as well as a stabbing pain in my right shoulder. Dan drove me to the pregnancy assessment centre at the hospital where it was discovered that my blood pressure was dangerously high (despite already being on blood pressure medication) and I suddenly couldn’t stop vomiting. At this point I was introduced to an obstetric physician (another wonderful doctor who I will always be grateful was sent my way) who would take on my care in addition to my obstetrician and she confirmed that I now definitely had preeclampsia. Once the doctors managed to bring my blood pressure down to a safer level, I was able to be taken up to the ward. A scan shortly after revealed that the blood flow to the twins was now not only intermittently absent, but it was also beginning to reverse away from them. Bizarrely, by this point my upper right quadrant pain had stopped and never returned. By the time I was critically ill, with my liver on the verge of rupture and liver function levels over 10 times higher than a normal range, I did not feel any pain at all (this is extremely rare to occur).
Upon consultation with my obstetrician, obstetric physician and a neonatologist, a plan was put in place to monitor the situation daily and deliver my tiny, tiny twins if we could just get them to 500g each (which would give them a chance at survival). I felt so relieved to be at that hospital (2 hours from my home in a town that didn’t have the facilities to care for us) with a plan in place that gave us a chance at a positive outcome. Sadly, that plan never eventuated. Early the next morning my obstetric physician came in and told me that my liver and kidneys were failing. I not only had preeclampsia, but I also had HELLP syndrome and if I didn’t deliver that day, at only 24+2 weeks pregnant, I wouldn’t survive. I wanted to sacrifice myself and save the twins, but that wasn’t an option as I was told in no uncertain terms that they still wouldn’t survive given how small they were. If I could have left so that they could stay, I would have.
By the time the decision was made that the twins needed to be delivered, my blood platelets had dropped to a critically low level and it was too dangerous for me to have a c-section unless I went under a general anaesthetic (this is because when your platelets are so low the risk of paralysis or bleeding out if an epidural or spinal are administered are extremely high). If I had the general anesthetic and the twins survived the birth then I would probably miss any precious moments we had with them alive, so we decided that I would deliver the twins vaginally in the hope we would be able to spend some time with the twins before they passed.
My induction of labour began at around 8:30am and by 8:30pm that night I was in labour and taken down to the delivery suite. After an incredibly traumatic birthing experience (through no fault of the medical staff, but purely due to the circumstances), our darling twins came into the world sleeping at 11:36pm and 11:43pm.
While we hadn’t found out the gender of the twins prior to the birth, something told me that we would have a boy and a girl, so we had only chosen one name per gender. We settled on James Louis (Louis for my middle name Louise) and Poppy Danielle (Danielle after Dan) as the names for our beautiful babies.
Something that I really struggle with now is saying that the twins were “stillborn”. It’s not because of the stigma attached to stillbirth, but because I know they were alive until the point they made their way through the birth canal. I felt them moving as I was in labour. James and Poppy weren’t delivered because they had died inside me, they were delivered to save my life and to give them the smallest chance of a life themselves. For this reason, I find it hard to say they were “stillborn”, even though they were, because it was only at the very last part of their exit into the world that their little bodies couldn’t keep going. And so, I straddle the line of being the mother of stillborn children and the mother of infants who died. These days, I say they were “born sleeping” or that they “didn’t survive the birth”. It may seem neither here nor there to an outsider, but the wording to describe the life and death of my babies is extremely important to me.
James and Poppy were absolutely perfect, aside from the fact that they were very, very tiny. James weighed in at 362g and Poppy at just 326g. For context, the average baby should weigh around 600g at 24 weeks, which shows just how growth restricted the twins were. The obstetrician who delivered James and Poppy, who at this point was only a few years off retiring, remarked that the twins’ placentas were the smallest he had ever seen in his career, so it’s no wonder they didn’t do their job of helping my babies grow.
I remained in critical care for two days after James and Poppy were born. Due to how unwell I was, I remained in the birth suite instead of being moved to ICU and this allowed us precious time alone with the twins. We had a cuddle cot in the room with us which meant they could stay with us the whole time.
Leaving the hospital without James and Poppy was so distressing, I think I cried all the way from my room to the car and then half-way home to Toowoomba. Thankfully I was taken out of the hospital through areas only accessibly by staff, so I didn’t have to endure seeing other women leaving with their babies, but it was still so hard. To leave the hospital carrying a memory box instead of a baby (or in my case, babies) is something I wouldn’t wish on anyone.
Learning to live in a reality that didn’t include James and Poppy was very hard. I cried myself to sleep most nights and on many mornings I cried when I woke up and realized that the twins dying wasn’t a dream. I also found that for months I would cry whenever I was in the car by myself for more than 10 minutes as well as in the shower every night. The grief just weighed me down. Over time I started to live “normally” again – I socialized, went back to work and started trying to conceive another baby when I was given the all-clear by my medical team, but I was still so sad all the time. It all came to a head during the first national lockdown we had due to COVID-19. Dan was away for work for weeks at a time, so I was alone almost always. I was undergoing fertility treatment (as I had done when trying to conceive the twins) and had had a miscarriage earlier in the year. I felt as though I would never be a mother to living children. It got to the point where getting out of bed each morning was a struggle and while I didn’t want to take my life, I didn’t care whether I lived or died. I reached out to a psychologist, which was the best thing I could have done for myself. She could hear the despair in my voice during our first phone call and made an urgent appointment for me, and I never looked back. Until that point, I hadn’t felt like I needed to see someone to discuss my grief and fear around falling pregnant again and I definitely think it’s something you can only do when you feel ready.
I’m pleased to say that my story does have a happy ending. In May 2020 I was thrilled to discover I was pregnant and I went on to have my rainbow boy, my beautiful Arthur, in November 2020 at 30 weeks and 3 days gestation, again delivering early due to preeclampsia and blood flow issues. Arthur spent 8 weeks in the NICU and special care but is now home and thriving. Being pregnant after a loss is extremely hard and something I didn’t anticipate was that having a baby at home wouldn’t necessarily lessen my grief for the twins – in fact, it often exacerbates it as having a living child at home has only served to show Dan and I what we have missed out on with James and Poppy.
Since having Arthur we have also been blessed with Theodore, the pot of gold waiting at the end of our rainbow. Theodore was also born prematurely at 35 weeks, again due to preeclampsia, and was home with us after a relatively short 16 day stay in special care.
While I know it is distressing to many people to have to experience the NICU and special care environments, I was just so happy that my babies were alive and doing as well as could be expected for their gestations that it didn’t faze me too much. I don’t think this makes me “better” than anyone who does struggle with having their baby spend time in NICU or special care, it’s just that my relative experience with the twins had such a horrible and heartbreaking outcome that any alternative was something I could cope with.
The reason I share my story is to raise awareness about HELLP syndrome and preeclampsia, but also to offer a beacon of hope for those who need it. I know what it’s like to be in the black hole of despair as a mother who has lost her baby (or as is the case for me, babies) and to make it through the grief to the other side.
Overall, I am doing well now. I have a happy and full life and adore our two precious earth-side boys. However, there will always be two parts of my heart missing, in the shape of a J and a P.
Photos taken by Emily Hetherington.
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