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Krystal Stivactas - my story

Krystal Stivactas - my story

We experienced 5 losses, 4 of which occurred within 1.5 years

My husband John, and I were keen to start trying for a baby soon after we got married. He  had always hoped for two children, whereas I hoped for three. However, what was to  unfold over the coming years took us completely by surprise and ultimately altered the  family planning trajectory. We experienced 5 losses, 4 of which occurred within 1.5 years.  Having gone through recurrent pregnancy loss meant I was caught in a repeated cycle of  trauma. My experience of cumulative grief and loss was mostly left unresolved, as I did not  have much time to grieve between my losses. This resulted in me being in a heightened  state of fear and worry each time I would fall pregnant, anxiously waiting for the inevitable  to occur e.g., running to bathroom to check for bleeds countless times a day, feeling  triggered by the sight of blood each time my period arrived. My experience is one that not  many people, including friends, family, and medical professionals, understood. Being told  to ‘relax’ whilst living in a constant state of trauma, felt redundant and dismissive. Medical  professionals were quick to dismiss me, claiming I did not have an issue with fertility. My  intuition was telling me otherwise, propelling me into the centre of a medical minefield  and eventually becoming the agent of change in my narrative.  

We fell pregnant with our first pregnancy in October 2017, after a short time of trying to  conceive. I was 32 years old at the time. We were filled with such excitement and  gratitude. I gained an increased appetite and an aversion to certain smells. At the same  time, I was passing blood with tiny clots. I remember thinking it was likely an implantation  bleed, therefore wasn’t too concerned at the time. But as the days went on, the bleeding  continued, so I decided to reach out to an obstetrician, who came highly recommended by  friends and family. He advised a dating scan to be performed the following week.  

At the dating scan appointment, we heard the reassuring sound of a heartbeat. It was  during the scan we also learned I had what looked to be a septate uterus, which the  sonographer described as being a ‘heart shape’ uterus. Despite hearing a heartbeat, the mood in the clinic felt low, as though we needed to air on the side of caution.  

I was scheduled for an appointment with our obstetrician the following week, the bleeding  still ongoing. I remember sitting in a room of heavily pregnant women. One woman asked  me how far along I was. ‘Six weeks’ I happily replied. I approached our obstetrician with a  smile on my face, laid down on the bed while he scanned for a heartbeat. Moments later,  he solemnly placed his hand on my shoulder and said, ‘unfortunately this pregnancy will  not continue’. Tears began to fall as disbelief and sadness set in. It also felt as though my  innocence and naivety around something as pure as pregnancy changed forever in that  moment. Once I got up, our obstetrician positioned a stool between myself and John,  while he delivered the results from my dating scan. Reading his body language, I  remember thinking what he was about to say wasn’t going to be good. He told us that I  likely had a septate uterus, which may have been the cause of our pregnancy loss. He  strongly advised I undergo a dilation and curettage (D&C), to remove the pregnancy tissue to avoid infection, as my body showed no sign of completely passing the tissue naturally,  and that the tissue will be tested for chromosomal abnormalities. The D&C was booked  the following week and while awaiting my procedure, I remember experiencing conflicting  feelings, one was grief, that in a couple of hours my ‘baby’ will not be a part of me  anymore, the other feeling was a sense of relief the D&C would bring, forcing me to move  on from this loss.  

Several days post D&C however, I suffered significant abdominal pain, which only subsided  once I was given pain medication by the nurses at my local hospital. Having been notified  of my admission, our obstetrician called me to explain that the abdominal pain may be due  to left over pregnancy tissue in my uterus, and that my uterus was contracting in an  attempt to remove it. He recommended referring me to a gynaecologist/ laparoscopic  surgeon for a hysteroscopy, to determine the shape of my uterus and resect it if necessary and to also remove leftover pregnancy tissue, and for a laparoscopy to check if I had  underlying fertility issues such as endometriosis, after informing him of my history of  significant period pains. He suggested that prior to the surgery that I go in for a  sonohysterogram. Our obstetrician also informed us that our pregnancy loss was not due  to a chromosomal abnormality (further supporting the need for a laparoscopy), and that in  fact our embryo was a female. The revelation of our baby’s sex at a time of loss, was  difficult to accept. I felt a new wave of grief wash over me. It dawned on me in that  moment, that if things were different with my anatomy and fertility, then in 6 months’  time we would have welcomed a baby girl into the world.  

The revelation of our baby's sex at a time of loss, was difficult to accept.

After meeting with my gynaecologist, I was booked in for the laparoscopy and  hysteroscopy the following week. I was relieved that I didn’t have to wait long. Following  the procedure, my gynaecologist visited me while in recovery, informing me that the  procedure went well and that he was able to resect the septum in my uterus, which he  guaranteed would not impact future pregnancies. He also removed endometriosis, which  he said was ‘severe’ in certain areas. He was also able to remove the leftover pregnancy  tissue. I was finally able to part from the pregnancy after 3 months.  

At the post-op appointment, he informed us that we can resume trying to conceive in a  couple of months. Naturally, I felt worried about conceiving after pregnancy loss. I decided  to ask him questions pertaining to our chances of falling pregnant successfully, which he  replied by saying, ‘are you planning on having a soccer team?’, ‘you will fall pregnant  again, we just live in a world of instant gratification’. I left the appointment feeling  ashamed that I had revealed my worries, only for them to be trivialised. I understood his  intention of making light of the situation to reduce my worry, however it felt as though  there was a disregard for what my husband and I endured the past 3 months.  

Explaining our loss to friends and family didn’t go the way I thought it would.  Understanding that pregnancy loss is a taboo subject within society, the comments I  received regarding my loss was for the most part, well-meaning. I was told, ‘at least you  can fall pregnant’, ‘at least you can fall pregnant easily’ and ‘at least it happened early’ and ‘it was meant to be’. I could feel the discomfort in me sharing such personal news and  them being uncertain how to respond. Beyond such commentary from people, feelings of  hurt and angst were brought about by others sharing their sonogram scans with us  (despite being aware we did not detect a heart-beat weeks before and while still  technically ‘pregnant’ with an unviable pregnancy), or an invitation to a gender reveal  party at the time we learnt we were pregnant with a girl. My experience of loss made me  want to retreat from social interaction, to protect myself from ‘well meaning’ comments  and actions. It was in this moment that I understood why so many women suffer in silence  during their first trimester.  

As we waited for the opportune time to conceive again, I decided that John and I see a  fertility specialist for some basic fertility tests. I selected a female specialist, in the hope of  some empathy. After much convincing, the fertility specialist reluctantly agreed to run  some tests, and advised we try to conceive once we were ready. Approximately a week  later, I received a direct phone call from the fertility specialist advising us to stop trying to  conceive asap, to avoid another ‘tragedy’. She went on to explain that both John and I  carry the Beta Thalassaemia trait (Beta Thalassaemia Minor), which would have genetic  implications for our offspring, including lifelong fortnightly blood transfusions. We were  strongly encouraged to either go down the IVF Preimplantation Genetic Testing (PGT)  route, or to undergo comprehensive genetic testing and counselling. We decided on the  latter, which took 6 very long months to complete. We were then referred to a  magnificent haematologist who informed us that our odds were reduced as my condition  was considered ‘borderline’, therefore strongly encouraged that we try to conceive  naturally. 

John and I were feeling optimistic during this time, as though we had done all we could to  improve our chances. We fell pregnant shortly after, one year since our last. I approached  this pregnancy with caution and concern, only made worse by a bleed at 5 weeks. However after a formal dating scan at 6 weeks, we heard our baby’s wonderful heartbeat.  As the weeks progressed, I felt my worry dissipate. My pregnancy went relatively  smoothly, despite the 20-week scan identifying a velamentous cord insertion, requiring  planned c-section at 38 weeks, for the safe delivery of our baby. 

We welcomed our rainbow baby 'Eve' in May 2019. 

Having Eve was such a blessing for John and I. She brought great joy into our lives. As  much as I feared the idea of having to conceive again, I knew that we had to start sooner  rather than later (considering my history), if we wanted Eve to have a sibling.  

At approximately one-year post-partum, John and I fell pregnant again, however we  experienced another loss at 5 weeks. Unlike my first experience of miscarriage, this time  around I passed the tissue at once, and bled for approximately one week. I was  disappointed that I had experienced another loss but was strangely relieved for it to have  been over quickly in comparison to the first time. I was told by my GP that I had a  ‘chemical pregnancy’. We then fell pregnant again the next cycle; but I again began to bleed at around 5 weeks. This time the bleeding continued for several weeks. Despite  detecting a heartbeat at the dating scan, I knew when seeing our obstetrician at 7 weeks,  that it wasn’t going to be good news, as I was still bleeding.  

Despite being a lot more aware of what was going on with my body and my pregnancy this  time around, I still wasn’t prepared for what was to soon be revealed. I remember crying  as we painstakingly waited for our doctor. Through the thin clinic walls, I could overhear  jovial conversations of due dates, and the sound of heartbeats via ultrasound. Sadly, as I  had expected, a heartbeat was not detected that day. I could hear our obstetrician talking,  but I wasn’t paying any attention. My mind struggled to process our loss, despite spending  the last few weeks grieving the pregnancy. I suppose somewhere deep down, I had some  hope of a miracle that day.  

A D&C was arranged soon after, along with another hysteroscopy and laparoscopy to  ensure the endometriosis had not returned, and to remove leftover pregnancy tissue. I  remember being in the sterile anaesthetic bay crying silently, waiting for the moment they  wheel me into theatre to take my baby from within me. The procedure went smoothly,  endometriosis not detected, and pregnancy tissue removed effectively. Frustratingly, due  to a decision not made by me, the pregnancy tissue was not tested.  

At this stage of our journey, I decided to reach out to a private psychologist to discuss my  grief, but my experience during our initial appointment was not what I had expected.  Instead of feeling heard, her response to me was, ‘your loss was meant to be, otherwise  the baby would not have been well or survived’. This was despite her having been informed of the circumstances around my losses. Suffice to say, I did not return to see her. 

Instead, I decided it was time to reach out to my fertility specialist again to see whether  there was anything John and I could do to improve our chances of a viable pregnancy.  Unfortunately, her initial reaction to my chemical pregnancy was also dismissive, claiming ‘it was barely a pregnancy, more like a delayed period. The reason you knew you were  pregnant at 5 weeks was because you tested so early’. She blamed society for a woman’s  need for instant gratification when it comes to pregnancy, echoing the same sentiments as  my gynaecologist. She went on to dismiss that I had any fertility issues, supporting her  views by the fact I could conceive easily. She refused to run any more in-depth fertility  tests, citing the lack of need for them and that they were expensive. She effectively had  decided for us that we shouldn’t part with our money, for tests that we wanted. Her  parting comments to me were, ‘you just need to relax’. I left that appointment feeling  patronised and ashamed again for feeling worried about my fertility. I decided that it was  time to seek a second opinion. 

After several months of trying to conceive, we met with a new fertility specialist. He  caught us off guard with a throw away comment, ‘you must have enjoyed quite a bit of  travel in your twenties’, implying my fertility struggles were self-inflicted. However, he did show us compassion by supporting the need for in-depth fertility testing due to my fertility history. Unknowingly, we were pregnant at the time of the appointment, so we had to put  the tests on hold.  

A dating scan was arranged at 6 weeks. I was feeling somewhat cautiously positive as I  hadn’t experienced any bleeding thus far, only to be delivered the devastating news that a  heartbeat was not detected. However, our fertility specialist thought perhaps it was too  early to detect one, suggesting I may have gotten the dates of conception wrong. But in  my mind, women who are desperately trying to conceive rarely get their dates of  conception wrong. I felt frustrated that he didn’t believe me, and that we were forced to  return for another scan to only confirm the inevitable. I felt helpless but had no choice but  to return in a fortnight. 

Two weeks of torment passed and at 8 weeks we returned for our second scan, only to be  told what we already knew. There was no heartbeat. What he did find however was a  foetal pole, suggesting the possibility of a heartbeat being detected soon after. The  specialist recommended we return for a third scan a week later. Even though his words  were hopeful, I knew we had suffered another loss, so the thought of enduring yet  another scan felt unbearable.  

A week later, we returned for the final scan, during which we were finally told that we did  in fact have a missed miscarriage. I would have been 9 weeks pregnant at the time. The  specialist’s reaction was warm as I left his rooms, patting me on the shoulder and stating,  ‘you will get your baby’. I wanted to believe him. I was booked in for a D&C the following  week, as my body once again showed no sign of passing the tissue naturally. The  pregnancy tissue was tested this time.  

After regular beta hCG blood tests to ensure I wasn’t pregnant anymore, John and I  underwent the in-depth fertility tests. We met our specialist once the results were in, a  month later. Sadly, he began by sharing the embryo did not have a chromosomal  abnormality, and that the sex of our embryo was male. Being provided this information  several weeks after our loss, put me right back at the centre of my grief. Knowing the sex  of our embryo, only personified our baby, despite not hearing his little heartbeat.  

 Knowing the sex of our embryo, only personified our baby, despite not hearing his little heartbeat.

Our specialist then informed us that John’s results had come back as normal, but that I had  tested as having elevated ‘high’ natural killer (NK) cells, which he was happy about  because it was treatable. With elevated NK cells, the immune system becomes overactive,  recognises the embryo as a threat and eliminates it. He informed us that once pregnant, I  would commence on a ‘protocol’ consisting of Prednisolone (corticosteroids),  progesterone pessaries, and Clexane injections (blood thinners), which would attempt to  suppress my immune system. He routinely outlined the risks associated with this protocol  when in use in pregnancy, which he didn’t believe were that significant.   Realising that my body was attacking our embryos further complicated my grief. I felt as  though my body was a complete failure. I also felt guilty that I was letting my husband  down, who had been nothing short of amazing throughout our fertility journey.

After the appointment, I decided to do some research on this protocol, and came to  realise that there was some controversy around it within the fertility circles, particularly  due to the use of corticosteroids in pregnancy and the risks associated. I decided to  arrange a phone consult with another fertility specialist from a reputable fertility clinic for his opinion on the matter. Having provided him with my fertility history and the  recommendation of the protocol, he dismissed our losses as simply ‘bad luck’, adding that  I did not have fertility issues as I was highly fertile. He disapproved of the protocol, stating  the risks were greater than the benefits. I was disillusioned by this appointment,  disagreeing that I did not have issues with my fertility. I felt a lot more confident about  this, then when we first started our journey. He believed we should continue trying, even  if it meant enduring several more losses. This just wasn’t an option for me. I realised in  that moment, that I wanted to do all I could to improve our chances of a viable pregnancy,  and that was to give the protocol a shot, as the benefits far outweighed the risks. I felt as  though a plan was forming and that I was regaining hope.  

I decided to go back to my fertility specialist to speak with him about undergoing IVF  treatment, particularly PGT Preimplantation Genetic Testing. I was eager to commence the  protocol whilst pregnant with a viable embryo to improve our chances, whilst being  mindful at the same time that IVF is not fool proof, and that loss can still occur. I had little  to no faith that my body could do it on its own, even with the protocol. Our fertility  specialist advised we try to conceive naturally for another 6 months and if not pregnant  within that timeframe, then only then to reach out to him for IVF. We agreed, despite  feeling frustrated that we were left to our own devices again.  

We fell pregnant soon after, only for the inevitable to happen again. A positive pregnancy  test, coupled with a bleed at 4 weeks. My beta hCG levels climbed slowly over the coming  weeks (tracked again via many blood tests), however, not enough to deem the pregnancy  as viable. There was query of an ectopic pregnancy because of the pattern in which my  levels were climbing, but thankfully this was not the case. My anxiety was at an all-time  high. I passed the tissue naturally over the coming week.  Naturally, I felt great sadness at our fifth loss, however the stronger emotion I felt was  anger. Anger that this loss happened when I pleaded for intervention. I was fed up with  passively complying and feeling disempowered by the recommendations and timeframes  placed on my fertility. I felt it was time that I re-claimed my narrative. 

I began to talk openly to family, friends, and wider social networks about our situation. I  wasn’t ashamed of my story anymore. I remember the vibe shift in people’s responses  after I had informed them of our fifth loss, ‘Are you serious? What’s going on? You need  answers!’, compared to reactions after our first loss, ‘At least you can fall pregnant’. I  finally felt their reactions were validating. Through such conversations, several different  women had recommended I reach out to a well-known reproductive immunologist for  advice, as he had great success with helping women fall pregnant. I wasn’t sure if I wanted  to, as I felt content with the plan we had formulated with our specialist, and I didn’t want another opinion to influence our decision. However, I was intrigued by his title as  ‘reproductive immunologist’ given my condition and thought it wouldn’t hurt to hear what  he had to say while we waited the 6 months to commence IVF. 

Having provided him with my fertility history, and without shame or judgment he  informed me that I had an issue with ‘implantation’, reinforcing what we already knew  which was validating. He ordered a series of blood tests for John and I to complete. The  results identified my elevated natural killer cells (T-cells). He prescribed a similar protocol  to my fertility specialist to suppress my immune system, along with the addition of  Intralipid therapy, an IV solution given intravenously. The results also identified that John and I shared a partial HLA (Human Leukocyte Antigen) match of the DQ Alpha gene.  Basically, this means my body identifies John’s DNA within our embryo as foreign, which my immune system attacks with the natural killer cells, eliminating the embryo as it is  deemed a risk. He recommended that we undergo LIT treatment (Lymphocyte  Immunisation Therapy) for this, which required the drawing of white blood cells from  John, then injecting it intravenously (that afternoon), so that my body could recognise and  accept John’s DNA. This was conducted twice, 4 weeks apart.   He also identified that I had tested positive for the MTHFR gene mutation, meaning my  body does not break down folic acid. Folic acid is essential in pregnancy, as it can put  women at risk of recurrent miscarriage, and other complications. He recommended that I  start on MTHF capsules right away, along with other antioxidant supplements. I  appreciated his holistic approach to my fertility and in supporting my body to accept a  pregnancy.  

John and I felt comfortable and at ease with the reproductive immunologist’s plan for us,  so we decided that we were going to follow his protocol instead, with the addition of LIT  Treatment and Intralipid therapy. This decision was easy, simply because he was offering  us more opportunity for a viable pregnancy. We were at a stage where our needs and  wants became paramount, and we were willing to do all we could to end our pain and  sorrow. 

We also felt like this would help us get to a stage of acceptance in our journey, knowing we did all we could to provide a sibling for Eve.

Desperate to implement the protocol and additional treatments sooner rather than later, I  pleaded with my fertility specialist to commence IVF. We compromised by starting with  ovulation induction. Unfortunately, we were unsuccessful. Keen to step it up a notch at  the next cycle, I pleaded for the next step, so my fertility specialist agreed we do IUI  (Intrauterine Insemination), in which sperm is washed and concentrated and then placed  directly into the uterus around the time of ovulation. After a couple of excruciatingly long  weeks, it was confirmed that we were pregnant and showing promising hCG levels.  

I nervously informed my reproductive immunologist of our pregnancy. He started me on  the protocol and referred me to a local private hospital where I would undergo Intralipids  therapy, every 3-4 weeks (8-hour day stay) from 5-30 weeks gestation. Whilst at my first  Intralipids session at 5 weeks, I experienced my first bleed. I remember being in a total state of panic at the sight of blood. I was convinced the pregnancy was over, as most of my  pregnancies went south at approximately 5-6 weeks. But that wasn’t the case this time  around. We got to hear a strong heartbeat at the dating scan. Unfortunately, I couldn’t  shed the intense fear I felt each day during the first trimester, worried that my body will  fail me yet again. This was not helped by the weekly bleeds I experienced until 13 weeks.  

We received brilliant care from our obstetrician and his midwives during this time. They  treated me with great kindness and sensitivity. They offered me weekly check-ups and  referred me for formal scans after each bleed or where necessary. It was possible that  implantation may have caused a slight haemorrhage. It wasn’t until baby started to move  at approximately 16 weeks, that I began to accept the pregnancy. Despite another bleed at  33 weeks, and an overnight stay at the hospital for monitoring.

 We made it to 38 weeks before welcoming our long awaited second rainbow baby, 'Jaime', via c-section in May 2022.

After a long and challenging battle (four years in total), our family was complete and our journey finally over. The experience of cumulative grief and trauma associated with  recurrent pregnancy loss is something women experience silently and in isolation, as  pregnancy loss remains a taboo subject in our society. There is great reluctance to share  such personal news during the critical first trimester, a time where emotional support is  required, in the fear of being judged or our experience minimised. Sadly, the impact of past pregnancy loss can continue well beyond the first trimester, as we are consumed by  the overwhelming feeling of being robbed of celebrating various pregnancy milestones  that should be otherwise be filled with excitement and joy e.g. cautiously sharing pregnancy news with friends and family with a disclaimer that it may not eventuate, telling people to hold off from congratulating you until in the clear, avoiding thinking of baby  names to not get too attached, too afraid to purchase baby essentials or turning down  suggestions of a baby shower to not jinx the pregnancy etc. Our journey was very clinical,  we were forced into navigating the complex medical minefield on our own e.g., countless  blood tests, scans, invasive procedures, injections, medications, specialist appointments  etc. We sat back as some medical professionals made decisions about my body, and our  future without our hopes or emotions in mind. What we have learned from this journey, is  that anything is possible with the right support, both medically and socially, and that you shouldn’t stop at anything until you have your dreams actualised.

- Krystal