This is a PAL you certainly don’t want to meet down the pub.
The PAL I am talking about is Pregnancy After Loss, it’s the ghost that haunts you for 9 months, the Jacob Marley of all your traumas that will frequent your past, present, and future, never once leaving your side. It’s the ominous thoughts that lurk in your mind, the ones that stop you in your tracks at the sight of a new-born baby, and make you hold on until you’re bursting to go to the toilet because you’re too scared to see if there’s blood; the thoughts that paralyse you with fear when you walk into a scan room in case once again the world comes crashing down before you walk out.
Sadly, over the last 9 months, this is not the only ‘Pal’ I have struggled with. Actually, friendships are the one thing (despite the glaringly obvious pain of losing two pregnancies!) that has caused me the most upset and has had a very severe impact on my mental health. It’s been loss on top of more loss.
I’ve had friends who just didn’t know what to say or how to address the enormity of what I was going through so didn’t say anything, ones who have made incredibly insensitive comments at times when I was at breaking point, and most recently and shockingly friends I’d known for more than 20 years whom I am now estranged from over a miscommunication failure in announcing my pregnancy at the same time as another girl was sadly going through loss. It saddens me enormously that this should have occurred but what these friends all fail to understand is how loss and PAL changed me. It’s shaped every ounce of my being and utterly consumed me these last two years. My mind constantly fluctuates from grief to hope and then straight back to overwhelming fear – a fear that we may never get the happy ending, that if, God forbid, we go through this all again I won’t survive a third time, that there’s no fallback plan as we have no living children to hug that little bit harder, we have no knowledge that my body is capable of producing a healthy living child.
As I have tried to navigate 9 months of PAL I am fully aware I have been far from the best wife, friend, daughter or sister. I have often said the wrong words, been confrontational, and taken offense at the smallest things. My mind just feels completely overloaded and even getting through the day without having a panic attack is the best I’ve been able to do at times. To say this whole experience has been ‘make or break’ for friendships could not ring more true. Despite certain friendships breaking down completely, I have made some of the most incredible new ones and I will be forever grateful for those who have still stood by me, who acknowledge how bloody hard this is, and have never put pressure on me to get back to the ‘old Kate’, never had unrealistic expectations or a lack of consideration for what might be going on in my head, which quite frankly is a complete shit show most days!
As I sit here writing this, our baby is due imminently, a time that should be filled with joy, excitement, and nesting. Yet I still find myself closing the door on the unfinished nursery, the baby clothes remain just the essentials and the constant fear looms over me that even at this point we may still not get to bring them home. On the very first day of mat leave, I was yet again blindsided, this time by the news that my mum had been in a serious car crash. I thought I had planned and worried about every minute detail, I had catastrophised just about everything that could go wrong in this pregnancy, but I had forgotten about the bigger picture. As I try and focus on the positive – that she is OK and bones will heal – the anxiety of ‘expect the unexpected’ grows even more overwhelming.
Over the last 9 months, I have documented my journey, I hope that anyone reading this who is sadly experiencing PAL or has a friend or family member going through it will find some comfort and solidarity in these words (and realise that it’s not just the totally losing their shit daily!)
The Transfer
If you’ve read my previous blogs, you’ll know we turned to IVF not because we couldn’t get pregnant naturally but because we refused to go down that path a third time and decided to PGS test our embryos to give us the best possible chance.
Most people talk about the agonising two-week wait (TWW), but I have to say this wasn’t the case for me. Against all advice, I tested from 3 days post transfer, the embryo was a 5-day frozen transfer so technically this was the same as testing 8 days in a natural pregnancy. For me testing this early was like dipping my toe in the water, easing myself in gently that if it was negative I still had a few more days where the test could turn positive and if it was still negative then at least I would be prepared and the blow wouldn’t be as hard-hitting. These were just my thoughts and I am not by any means saying do this. Many people I know both going through IVF or trying month on month naturally prefer to just rip off the Band-Aid at 2 weeks and it be all or nothing. My clinic would not even entertain a positive test until 2 weeks later, sadly this is because chemical pregnancies can occur where the test shows positive but then quickly turns to negative over a few days.
My first very faint positive result was on day 4, incredibly early and so faint my husband refused to believe it, but it was there. From then on, every single day for the next 10 days, I peed on sticks at least 2-3 times a day, I quickly discovered only First Response tests will give accurate results that early. So having gone through 20 of those in under a week. I switched to Clear Blue and then Clear Blue Digital (the scariest one of them all highlighting in words “pregnant” or “not pregnant”). Every day I held my breath hoping the lines would get darker until eventually, they got so dark I stopped testing. I’m very aware I sound like I’m bat shit crazy and my Amazon purchase history would be cause for great concern to many, but this is what PAL does to you.
However, a positive pregnancy test literally meant nothing in my world anymore. I watch Insta reels of celebrities sharing pictures of positive tests with their friends and family and thought back to that blissful ignorance I used to have. Exactly two years ago, I was that person. On my husband’s birthday, I presented him with a positive test (because everyone wants a piss stick on their birthday right!?) thinking that meant we would have a baby in 9 months, oh how wrong I was….
This is now my third pregnancy, the third positive test, and this time I was determined to do everything in my power to not be blindsided again. From day 10 I started getting my HGC blood levels monitored at my GP; these levels need to double at least every 48 hours for a pregnancy to be viable. If they start dropping, it is a strong indication of miscarriage. So every 48 hours I dragged myself to the doctor’s and then waited to pick up the results the following morning. This was probably unnecessary torture but by the time I got to the first scan, everything was at least indicating the pregnancy was still viable. However, like in my previous pregnancies, I had a complete lack of symptoms, no nausea, no sore boobs, literally nothing. I prayed for some sign that I was pregnant, what I would have given to be throwing up in the toilet!
The first scan
In most IVF clinics, after they take your blood and confirm you are pregnant the next step is the viability scan. It was a fine line between having this too early to detect a heartbeat but not having the agonising wait of another week. We settled on 6 and a half weeks. It was as if time literally stood still the day of that scan, the last time I did a viability scan was in the second pregnancy when I was told there was no heartbeat and it felt like the world ended all over again at that moment. This time my way of coping with things was just to be in total denial. My attitude throughout the first 20 weeks became hope for the best, prepare for the worst. So, after being physically escorted into the scan room, hyperventilating and shaking uncontrollably, to find out there was a heartbeat actually came as quite a shock. However, to me this was yet again just another stepping stone. At no point did I acknowledge at this time that I might have a baby in 9 months. I simply saw it as another level in my own equally fucked-up version of Squid Game. We survived this round but that might not be the case in the next.
NIPT Testing
The next stage for us was where everything came crashing down in the first pregnancy. It was a stage we didn’t even reach in the second pregnancy. I’ve gone into a lot of detail on this in my previous blog as it was the sole reason why we did IVF, to try and negate the detection of any chromosomal abnormalities at this point. As we had PGS tested the embryo before the transfer, as far as science could tell, this embryo was euploid and no abnormal cells had been detected. However, despite the very high odds that this was in fact the case, my mind would not even for one moment accept this. The flashbacks of receiving that phone call at the hairdressers, the screams that still echoed of waking up realising this nightmare was a reality and the years of numbness and grief that followed still circled like vultures in my head.
We did an enormous amount of research on the most advanced NIPT testing available in the UK (I won’t go into detail on this now but please message me if you want any details and I’ll happily share). We settled on a test that was more advanced than the Harmony test, it tested for thousands of other abnormalities, most of which I had never even heard of. These types of tests are not covered on the NHS, but my biggest piece of advice in any pregnancy is to get some form of NIPT test done privately if money allows. The NHS testing is slow and not advanced enough and the reason why I was nearly 16 weeks pregnant when I had the termination for medical reasons. If we had known about these tests at the time and done this privately the first time round we would have at least had the information 6 weeks earlier. It wouldn’t have changed the most devastating of outcomes, but it would have meant there were more options available than second-trimester surgery under general anaesthetic which led to numerous other complications.
Before this blood test can be completed you have to have another viability scan. We decided to do this at an alternative clinic to our IVF clinic after researching private sonographers. Bedside manner was so important to me – having someone who understood the extent of the trauma we had been through and recognised the severity of my PTSD. This is how we found Ciara at the Kensington Medical Chambers. She was a guardian angel to me – the only person who could calm my nerves and put me at ease enough to eventually look at the scan screen (I wasn’t able to do this until 18 weeks). To my amazement, everything was still progressing well at this scan and then we had the agonising 10-day wait for the NIPT results. I tried every distraction there was whilst awaiting that phone call. My online shopping addiction peaked. I just shut myself away from the world and waited. Finally, we got the phone call that all results were normal. I expected to feel more relief, I thought that at last I would be able to enjoy the rest of this pregnancy, but the reality was I cried for hours and hours. I now felt I had more to lose, that I had to carry on completing the levels as the stakes became even higher.
20 Weeks
My addiction to scans continued for another 10 weeks. I tried as long as I possibly could to hold off because it triggered by PTSD but at the same time I battled with the fear that something had gone wrong again without my knowing. The scans became crack and Kryptonite. At first, I had them every week then gradually reduced them to 10 days and two weeks. It became a fix. The only thing that would get me through the days was knowing I had check-in points. But the reassurance of the scan quickly faded hour by hour as I was left to wonder if it would still be OK tomorrow. I was very lucky in a sense that I started to feel movement very early. From 16 weeks this became my way of monitoring the baby and did provide me with some reassurance. However, with the reassurance of movement came the terror of lack of movement. I ended up in hospital on 3 separate occasions to be checked over as I thought I had reduced movement, every time thankfully it was my anxiety just playing tricks on me. This series of scans led up to 20 weeks, just before Christmas. The time I had lost the second pregnancy the year before and was very soon approaching what should have been our first baby’s birthday. My head just went to how Christmas would be ruined once again, I think that time of year will be something I will always struggle with. However, yet again the ominous clouds lifted and we moved on to the next stage in the game.
Pregnancy Announcement
We had only told our very close family about the transfer. We waited until after 20 weeks to even officially tell most family. This was a place we had never got to before. Mentally I had to get past 16 weeks, the stage we had got to in the first pregnancy. I was in utter denial until then. I didn’t look pregnant at all and my way of putting one foot in front of the other was to simply go through the motions. There was no excitement or nursery planning, there was hope but it was always overshadowed by fear. By 20 weeks, my anxiety and panic attacks had spiralled after getting Covid over Christmas. I had to attend my 21-week NHS scan alone whilst my husband self-isolated but it confirmed we had finally made it to the halfway mark.
Shit had got real now. I felt at this point I had to start telling people. In my head, I felt telling people was more just a box-ticking exercise, that if something went wrong, at least they would know this baby existed. It was never the excitement and pure joy I imagine most people who haven’t gone through PAL feel. There was certainly no gender reveal, although we could have known from the NIPT test at 10 weeks this was something we still haven’t found out. We have no preference in the slightest. We’ve never wanted anything more than for he/she just to be healthy. I tried to tell friends individually, but I found the whole experience incredibly overwhelming. It took me a week in total to tell people. Most were incredibly supportive and their happiness shone through. I only wished I could feel the same and not have this gut-wrenching feeling something would still go wrong at any moment. I instantly declined the offer of a baby shower. I couldn’t even contemplate the games and presents not knowing if this would work out or not. However, my closest friends recognised this and we had a very low-key dinner that was just perfect.
39 Weeks
There has not been a week in this pregnancy where I haven’t felt utterly overwhelmed with fear, that tears haven’t fallen and that I haven’t woken up in sheer panic waiting to feel the baby move. I don’t think I had truly prepared myself for the effects that PAL would have on me. It’s a daily battle between your body and mind. Your body is doing its job but your mind forces you into self-doubt and fear that is utterly overwhelming.
This is the last time I will write before the baby arrives, as I go into this final week I have started to let myself imagine what they will look like. Will the baby be a blonde-haired, laid-back boy like my husband or a fiery dark-haired girl like me? (You have honestly never seen so much hair on a baby!). I’ve finally started to let myself believe now we will take this baby home, that we will get to meet them and that they will be our world.
These chapters of my story will never be forgotten but I hope with every bone in my body that the dialogue now changes, that the tears of loss become tears of joy, that the screams of night terrors become the screams of a crying baby and that the only shit we now get thrown at us is literally that of dirty nappies. And above all, that somewhere over the rainbow, dreams that you dare to dream really do come true…
K x
