Thursday, 17 September 2015

Item not in stock: Experiences with EPAU.

I think prior to this experience I believed that because pregnancy was a physical change that happened to your body it was pretty black and white as to what was happening whether this was good or bad. Apparently I was wrong and that is one of the biggest lessons I learned from my pregnancy.

In an older post I talk about how I found out I was pregnant. At the same time as this I was booked in for an ultrasound to check that it wasn't an ectopic pregnancy and maybe to double check I wasn't a few months pregnant. As I figured I would be sent home from the scan as I must only be the tiniest bit pregnant I had insisted Husband stay at work. 

I went in for my scan which ended up being internal as nothing could be seen on the normal ultrasound (lets not go into exactly what an internal scan entails, my mother reads this after all).
After only a few minutes the sonographer turned to me and said ‘I’m really sorry I can’t see anything, I think something has gone wrong with the pregnancy. There are some tissues on the side there, you can wait in the reception area and a nurse will speak with you shortly’. She then walked off to her desk to record my scan.

Devastated is only one part of what I felt. I also equally felt embarrassed, humiliated not to mention completely bewildered. I had three tests confirming I was pregnant, I’d had no bleeding, what was going on? I have never felt so vulnerable in my life up until this point. I put my clothes on as best I could and returned to the waiting room. I began scolding myself for ever believing I could have been pregnant, I started to tell myself that I must be so desperate to have a baby my body produced some kind of hormone and tricked all three tests. This sounds preposterous now but it felt very logical at the time. All of a sudden the tears came just to add to the feeling of utter humiliation.

After what felt like hours I was called back in with the nurse. I was not shown a picture of the scan. She explained to me that I had what was called a molar pregnancy and she was very clear that this pregnancy was not and would never be viable. I had no idea what she was talking about, I had heard of miscarriages, missed miscarriages, stillbirth but what on earth was a molar pregnancy? According to her it affects around 1 in 600 pregnancies every year and is a genetic abnormality caused by a faulty egg or two sperm fertilising one egg. To be honest the scientific mumbo jumbo isn’t important. The rest of the conversation I had with the nurse isn’t important, what is important however is that she was insistent that this pregnancy would never develop into a healthy baby. She did reassure me however that I could and would have lots of healthy babies in the future.

Speaking with a couple of friends who have experienced miscarriages I am aware that this seems to be a common phrase to say to women who have experienced or are experiencing the loss of a baby. I’m sure it comes from a good place; people want to reassure you that you will have a family in the future. Although this comes from a good place, here is how it sounds to the women who are going through a loss or how it at least sounded to me.

A life was created inside you and now it is dying or has died. There is nothing you can do to stop it and there is no reason why it has happened. You will have a baby in the future however and forget this one ever existed as you all walk off into the sunset to live happily ever after.  

Wherever you are with your grief the last thing you wish to be told is that you will one day move on. It made me feel dirty, how could I ever forget this tiny life? The first tiny life I created that was so cruelly taken away. For me (and maybe for other first time mums) it took away the wonderful feeling of excitement of finding out you’re pregnant, that no matter how many positive pregnancy tests you get from now on they would all be tainted by this loss.

After this devastating news I still had to walk home, collect my car and pick Husband up from work.
I still had to phone him and break the news to him, how was I going to tell him his baby wasn’t a baby? Even though I knew it was absurd I felt that in some way this was my fault, that I had raised his hopes of becoming a dad only to crush them. I think I phoned him and said ‘it’s not good news’. I can’t remember much else of what happened before getting home and I don’t want to. I do remember being at home sitting on Husband's knee crying my heart and soul out; I don’t think I have felt so awful emotionally in my entire life. The feeling of loss and disgust was indescribable. I felt disgusted and spooked by the idea that there was a strange cystic mass inside me.

Grief changes people, even if it’s only temporarily. I found myself having some very dark thoughts, mainly the thought of wanting rid of whatever was in my uterus. I actually prayed that I would start to bleed and miscarry, I prayed for it as hard as I had prayed to become pregnant.

Following my first scan I had several blood tests to check my hCG levels. One of these blood tests took place at that maternity unit. I sat and waited surrounded by bumps of varying sizes, watching mum and dads to be cooing over the scans of their babies whilst mine was dead or dieing. It was like the worst kind of torture I could imagine. The tests showed that my hCg levels were at a level for a normal pregnancy rather then higher then usual as was typical with a molar pregnancy. I was called back in for other scans which continued to show cysts inside my womb but also showed the firs signs of a developing baby.

 Over the next 4 weeksish I went through cycles of hope and despair, sometimes within 10 minutes of each other. I’m not sure they knew what was going on. In total I think we had 4 early scans, possibly 5. At the time it was like some strange torture but looking back now we had the privilege of seeing our little girl grow from the tiniest of specks into...well, a baby. At one point she looked like a pixelated black and white fried egg on the screen.
At around 6 or 7 weeks we went for a scan with a consultant. I was incredibly nervous. At previous scans we had been told that Alice was developing but there were also cysts in my uterus. It had pretty much ruled out a ‘full’ molar pregnancy but there was still a chance that it was a partial molar.
The scan with the consultant showed Alice was continuing to grow and develop despite the cysts still being there. It was also one of my most memorable scans as the consultant pointed to this tiny white flickering light and told us that it was Alice’s heartbeat. This tiny thing that looked like baked bean had a heartbeat, it was alive. Alice was alive! I have never felt so protective in my entire life. In my mind (although I know it wasn’t quite like this) Alice was fighting all the odds to survive. Her resilience gave me strength that no matter how painful it might prove to be I would not give up on her or the idea of her. I couldn’t believe that only 2 weeks before I had been explicitly told that this was not a viable pregnancy,it never would be and that a D&C would be arranged.
A scan at around 9 or 10 weeks showed that Alice was developing perfectly normally and the cysts had miraculously disappeared. To this day no one has been able to tell us what they were, to be honest I don’t think anyone cares which on the one hand is great but sometimes I think it is rather sad that we were put through such misery for nothing. The cystic structures did need investigating yes, but to inform a couple that the baby they want and already love is lost when there was in fact a chance this wasn’t the case is shocking. I don’t believe they listened to what I had to say about far along I was with my pregnancy, they didn’t entertain the idea that it might be far too early to see anything.

One of the best days ever! The first picture we ever got of our little girl.
Although this experience was a terrible one I did grow because of it and I learned a great deal along the way.

Professionals are human too, they are capable of error and a second opinion should be considered. There is a chance that you will remain disappointed but then nothing is lost. If you ignore your gut instinct and act without a second opinion you could lose everything including part of yourself.
We now call Alice our ‘impossible girl’ because it seems so unlikely that she should be here. I only ovulated on 2 other occasions that year. What were the chances that I ovulated on a day that did not fit in with any other cycle I’ve had before or since, that we just so happened to not use contraception in time to catch the egg, that this egg was then fertilised, implanted and we just so happen to find out early enough for me to start taking care of myself. If we had not gone to Urgent Care that night I would not have done another pregnancy test and we would not have discovered I was pregnant until a few months later when I had an ultrasound to find out why I wasn’t having periods (imagine how embarrassing that would have been!). On top of all of this what were the chances that I would be wrongly diagnosed with a molar pregnancy when there was at least some evidence to suggest this pregnancy would not be viable? Even after all of this the diagnosis turned out to be incorrect and we had a healthy low risk pregnancy ans we now have a healthy, happy nearly one year old.

Alice at 3 months old, her first Christmas. Here she is dreaming of Santa.


  1. What a rollercoaster, I felt quite emotional reading this. I can't even imagine how tough it must have been for you- I found the first 12 weeks to be such a worrying time, and I had a textbook pregnancy. That first scan with a heartbeat must have been such an incredible experience. Xx

  2. Hi Helen,
    It was amazing especially as I had expected to see nothing or a growth. Pregnancy is so worrying I never realised before, it's crazy!