Opening up about loss: it takes a village
For those that haven’t followed our journey from the beginning, I will give you some background into our previous struggles. Everyone else, feel free to skip ahead! We were diagnosed with ‘unexplained infertility’ when trying to conceive our first baby. It took us about 18 months to finally fall pregnant, on our third cycle of ovulation induction using clomid. We had a miscarriage at 8 weeks – an early ultrasound showed bubs had stopped growing and there was no heartbeat. I had a D&C and somehow fell pregnant naturally the next cycle with our second child, James. We heard the heartbeat at 6 weeks and were finally able to breathe a sigh of relief. However this pregnancy had multiple complications – heavy bleeding, abnormal scans, measurement scares etc. At 30 weeks I suffered pre-term premature rupture of membranes (PPROM) and delivered our baby via emergency c-section when all efforts to delay my labour were unsuccessful and bubs became distressed. James was born black and blue with a severely low platelet count and he was quickly diagnosed with a rare life-threatening platelet disorder called neonatal allo-immune thrombocytopaenia (NAIT). We were told he was extremely lucky not to have suffered internal bleeding; if he had been delivered naturally or I had carried him to term, he probably wouldn’t have survived. There is a 50% chance that our next baby will also suffer this condition, and I will therefore receive weekly infusions throughout my pregnancy to reduce the risk of serious complications. The doctors believe James was born prematurely due to a severe septum in my uterus (which I also only found out about when pregnant) – he was confined to half a uterus and ran out of space. This was also believed to be contributing to our fertility issues, and along with NAIT, increased our risk of miscarriage. Over the past year I have had two surgeries to resect the septum, the first being unsuccessful. The second surgery was finally a success, which brings us to now. We conceived baby #3 naturally on our very first try, but I started bleeding at 6 weeks.
On Tuesday, as I drove down to have the ultrasound that I knew would change our future one way or the other, I was surprisingly confident. Yes I was terrified that our fate was already determined and there was nothing I could do to change it, but somewhere inside there was hope. Scott met me there and the first thing I noticed was the terror in his eyes. As we were sitting and waiting, he said “I hate this. I’ve never been excited for an ultrasound. Not once, not even with James. We have never had a good experience.” It tore me apart to think that we will never get to celebrate a pregnancy the way others do. We will never get to experience those exciting normality’s without being plagued with fear. Our past experiences had taken that away from us and taught us to be cautious in order to protect our hearts.
It was clear from the start of our ultrasound that it wasn’t good. The sonographer did an abdominal scan first and we saw the gestational sac, but not much else. She told me to go empty my bladder so that we could do an internal, and at that very moment, I passed a large clot into the toilet. This was the universe slapping me in the face and telling me to just bloody accept it. I was in tears when I got back to the room and I knew it was over – I looked at Scott and I could tell that he knew too. They continued with the internal, not saying a word, while Scott and I grieved a baby that we had made plans for over the past year, but would never get to meet. We’ve been there before; somehow experiencing a feeling of gut wrenching pain and complete numbness all at the same time. But none of these hardships have toughened me. It hasn’t gotten any easier. My heart was crushed into a thousand pieces all over again in the exact same places that had never truly healed.
When I shared our pregnancy news early I knew there was the possibility that we would miscarry and that I’d have to share that heartache with the world. In fact, being open and honest was my way of challenging the tradition of announcing pregnancy after 12 weeks and reducing the guilt and shame associated with miscarriage. But I guess I wasn’t prepared for how difficult it would be until it happened. I don’t regret sharing out story for one second, but Tuesday when we received the worst possible news, I felt those exact two things – guilt and shame. Yes, I know the facts; miscarriage is common, it’s not my fault, I couldn’t have done anything to prevent it, we are just ‘unlucky’. But at what point does it stop being bad luck and you start to question yourself? I’m not going to deny it; after those first moments where my heart shattered inside my chest and my dreams were torn away, I thought ‘how stupid am I going to look?’ I felt foolish for holding onto such high hopes, for celebrating so early, for believing that this time we might be the happy statistic and not the ‘unlucky’ ones. I should have known it was too good to be true. I should have known it wouldn’t be that easy for us. It never is.
I constantly get told that we are so brave and so strong, but I certainly don’t feel brave. And sometimes I wish people would see that I’m vulnerable. The fact that we’ve been here before doesn’t mean I’m better equipped to cope. In fact, for the first time in a long time, I feel like I’ve been beaten. I feel broken and deflated. And although I absolutely hate to admit it, I feel alone. I’m not a quitter, but right now, I honestly don’t know how I’m going to get the courage to do this again. I know we need to allow ourselves time to grieve, but I’m stuck in a place of nothingness. One very selfish and lonely part of me just wants it all to be over, while the other part can’t even muster the strength to think about moving forward. I don’t want to face the process that is required to make our dreams a reality. I know there will be people who expect me to sugar coat the truth so they don’t have to feel uncomfortable hearing it, but this is the reality of now and I’m going to speak it. I know that time will help me to heal and each day will bring new light, but for now, my heart aches in corners I didn’t even know existed.
Despite all of this, I desperately need you to know that we feel like the luckiest people in the world to tuck our little man into bed at night, each battle reminding us of how he defied the odds that were so hugely stacked against him. He is without a doubt the brightest shining light at the end of each and every tunnel. We do not take this for granted. Please also understand that I don’t want to be pitied. I don’t write about our experiences and share our journey to get sympathy. Sharing this feels very raw and very scary, and it certainly isn’t easy for me, but it’s important. I’m opening up about something I am still struggling to understand myself, in the hopes that others can understand it a little better. I'ts ok to break the silence. It’s ok to feel guilt and shame, it’s ok to be vulnerable. It does not make you weak, it makes you human. This is real, it is devastating, and it happens way more than we hear about. It happened to me…twice. But mostly, no one should have to go through it alone. It takes a village. If you can’t find yours, I’m here. I’ve got your back.
Together we can break the silence.
If you have lost a baby, please don't hesitate to reach out and gain information and support from the following organisations:
If you want to talk with someone who has been there before, my door (or email) is always open!