Trigger warnings: IVF, TFMR, miscarriage, pregnancy
When I started this journey, I thought I would be incredibly open about it. I thought I would share the entire journey (not the number of embryos on score boards etc ,that’s never been my style!) but at least the ups and downs and the process. But as we dived headfirst into this world of the completely unknown, the injections, constant scans, and what felt like a lifetime of waiting, I felt myself retreating further into myself. Things become so complicated I stopped even talking to friends and decided the only way to get through this was to keep my head down and just keep swimming. But now, with greater knowledge about IVF and chromosomal testing than I ever thought it was possible to have, I feel I can better reflect on it and I’m finally ready to share my experiences…
So, a bit of background on our decision to do IVF, as this was certainly not recommended to us or even advised by any NHS medical professional. (In fact, I got quite the opposite advice on a call with a consultant, who clearly thought I had lost my mind and that this was a very extreme course of action!) However, what he and many other consultants, doctors and nurses failed to recognise was that for us, IVF was about protecting my mental health. After nearly two years, a late termination for medical reasons, a missed miscarriage, and no living children, my mental health was in pieces.
The thing that people couldn’t understand about us doing IVF was that I could pretty much blink and get pregnant naturally. Everyone blankets IVF as the last resort after years of infertility but that was not the case for us at all. I’ve talked about our ability to get pregnant in my previous post as the only ‘silver lining’ in this utter shit show. Despite having to have surgery and quite a long recovery, this was very thankfully restored. I am very aware that is not the case for many, and I feel very grateful that was one thing we were able to hold on to through the process. We knew we could get pregnant; all we needed was that one healthy embryo…
After the TFMR, I went turbo on trying to find out the cause. How could we be in the 0.1%? We were young and healthy and had no previous issues in our family. The TFMR was due to very severe chromosomal issues. The only test we were offered on the NHS was to test the foetus and confirm if we were carriers of any abnormal genes. We were advised that we were not and then pretty much kicked out of the door and told to keep trying – better luck next time….
So that’s what we did, we tried again, feeling safe in the knowledge that this was a terrible fluke; that lightning doesn’t strike twice. After months of therapy, I had utterly convinced myself that it couldn’t possibly happen again. Five months later I had a missed miscarriage and the world ended all over again. I felt cheated, I felt that they had missed something and that more tests should have been done, that this couldn’t just be ‘ terrible luck’ again.
This time they refused even to test the pregnancy tissue and just put me down as the one in four whose pregnancy ended in miscarriage. Once again, I was sent off to try again and hope for better luck next time; but this wasn’t buying a lottery ticket; the second loss nearly destroyed me. I didn’t even recognise myself. I was not willing to just ‘keep rolling the dice’ and so we began the frantic search to find a magic wand to fix this…
From then on, we spent weeks researching. We explored every test, every measure that might slightly help us. Believe me, there was no stone left unturned in our mission to try and improve our chances of having a healthy pregnancy.
We found a clinic that came highly recommended and specialised in genetics. Happy to share details if anyone wants more information on the clinic, what I will say is that although their bedside manner is abysmal, their success rate is incredibly high. When all we wanted was a healthy baby, that was the clinic for us!
After our initial consultation, we decided that PGT-A (pre-implantation genetic testing for Aneuploidy) also known as PGS , was the route we wanted to go down, which can only be done through egg collection and fertilisation through IVF. We’d already done so much research into this and it wasn’t really a discussion. We just told the consultant that was what we wanted! I’ll explain a bit more about this shortly but essentially any of the embryos that make it to day five (blastocyst) can then be frozen and sent away for testing. PGT-A testing is the only test that exists that can tell you if an embryo is chromosomally abnormal. As approx. 50-60% of pregnancy loss or failure to implant is caused by chromosomal issues, as was true in our previous pregnancies, we felt like this would give us the reassurance we wanted that if we got pregnant again, we had done everything in our power to give us the best possible chance.
There are arguments against PGT-A testing, and I will reiterate here I am not a medic and anyone going into this must do their own research. You can potentially lose healthy embryos in the process of testing – these are called mosaic embryos, which, when implanted can develop into normal embryos in some cases. In the UK they mostly like discard all abnormal and mosaic embryos (unless in specific situation with genetic counselling).
We would never have risked transferring a mosaic embryo after what we had been through, so for us, there was no downside to PGT-A. It can significantly improve pregnancy success rates if the embryo implants, help avoid the pain of multiple miscarriages and failed transfers and cut down the time and money spent on IVF in the long run. This is absolutely not to say these things cannot happen; they can and do but it significantly decreases the odds of failure compared to transferring an embryo that has not been tested at all. I am so aware many conditions cannot be tested for and other complications can happen along the way. But for us, this was a huge piece of the world’s most awful puzzle that had been missing in the first two pregnancies. It gave us the confidence that, if we could fix this, things might just work out…
Before we started the IVF process, we decided to do all the tests we could find to understand if there were any other issues. Karyotyping, blood work, sperm motility, morphology, you name it. Of course, my husband was winning gold stars at every test whereas I, on the other hand, was always falling at every hurdle. I was diagnosed with low AMH (egg count), high FSH (egg growth stimulation and higher chance of miscarriage), and the thinnest uterine lining possible… quite frankly IVF for me just seemed to stand for I’M VERY FUCKED!
One of the things I want to touch on before I go into the ins and outs of our journey, is that I appreciate we are in a very privileged position to be able to fund IVF privately and completely acknowledge this is not an option for many people. The money is something that no one ever really talks about; people just hide behind the ‘it’s all worth it to have a baby’ well yes, it is, of course, but my God, the amount of money we have spent is insane and something I was completely unprepared for. Every test was another £500 here, a scan £200 there. We had managed to rack up nearly 3k before we got anywhere near starting IVF. The very sad fact of how long we could keep doing IVF came purely down to finances, as we did not qualify for any funding whatsoever.
The NHS does not offer PGT-A testing under any circumstances, which is why so many people do not realise this is even an option. PGD (pre genetic diagnosis) is offered if you are a known carrier of a genetic condition but this is quite different and only tests for that one specific abnormal gene, not the multitude of other abnormalities that can also occur.
In the knowledge that we were not carriers of any pre-existing condition but that my egg reserve was low, and time was not on our side we started IVF within a month of our first consultation. I went into IVF completely headfirst, I was never nervous or anxious about it; I purely saw it as a positive step after so much pain. This was my attitude throughout, and I truly believe that helped keep me sane in the process. Despite severe PTSD around scans which are of course unavoidable in IVF, nothing phased me and I just went about my daily life high up to my eyeballs on meds, injecting countless times a day and going into surgery minutes after finishing work calls. You hear so much negativity around IVF and maybe for some people it’s a lot worse but in all honestly, I didn’t find it that bad at all. The drugs did take their toll and my hormones were all over the place (my husband had to take the brunt of that!) but for me, there was no looking back. I was hellbent on getting us a healthy baby.
The thing that did hit me very hard though was the waiting. After being told my egg reserve was low, we decided to do ‘batch’ egg collections; basically, doing a collection back-to-back one month after the other. It meant being on meds for 70 days and, in hindsight, I’m not sure I’d recommend this. My body was in pieces, but I just wanted it over. The wait to see if we were going to get embryos felt like an eternity.
In our first collection we got nine eggs, seven fertilised and all made it to Day Three so were frozen at the point. This didn’t tell us anything as they needed to be thawed and grown to Day Five with the second batch before they had any hope of going to testing. In our second collection we got eight eggs, seven fertilised and all made it to Day Three. Then came the most anxious wait to see how many out of the 14 would make it to Day Five. They could then be tested, which, to us, was the only thing that mattered in this whole process. We found out seven made it and could be sent away for testing. We expected low numbers but hoped at least 50% of these would come back normal after testing.
The wait for those results was the worst of all. Eight months and our life savings were riding on this. Could we produce any healthy embryos? We finally got the news that only two out of the seven were healthy. The other five were all completely chromosomally abnormal – that meant they would have been guaranteed to end in failed implantation, miscarriage, or a very sick baby. I found this incredibly hard to take in but it validated everything behind our choice to do IVF with PGT-A. For a couple of our age with no pre-existing conditions, having such a high proportion of abnormal embryos is rare. But we still felt very lucky that we got two normal embryos and hope and pray that two are all we need.
The next stage was something we kept almost completely private. For the last five months, my husband and myself have pretty much existed in a bubble of sheer terror, anxiety, and denial, but there was also hope. We did our first transfer at the end of August last year and it worked the first time. My God, I was not prepared for quite how difficult this would be the third time around. I am going to write a whole blog post on pregnancy after loss, but I’ll save the details for now and share when I’m hoping to be even nearer the finish line.
As I write this, I am currently 24 weeks pregnant, having had private scans nearly every week to try and reassure me, which seems mad when I say every scan triggers my severe PTSD and visual flashbacks from previous loss. However, although the scans are traumatic, at the same time they also became my security blanket- something to cling to as the weeks went by, as it marked the passing of time. As each scan ticked off the weeks, it also took me nearer to the place where I could start to find hope.
After having had the most advanced NIPT (non-invasive prenatal testing) blood test out there to check for any abnormalities and just to make sure the PGT-A testing had worked, we are now safe in the knowledge that this pregnancy is chromosomally normal. This is something we’ve never achieved before and as far as they can tell, everything is progressing well. This doesn’t stop me literally waking up in cold sweats almost every morning fearing this is going to be the day the world comes crashing down again but I’m trying to navigate it as best I can and am now starting to believe this is the one we will get to finally take home…….