December 7th 2016. A day I had been dreading. Exactly three months to the day of our little Holly silently entering the world, we had our post mortem results appointment.
There is something quite surreal about walking back into an Antenatal clinic with no blooming baby bump or anticipation of seeing your little one on scan. In fact, the last time we were here was to have an injection put into Holly's heart, surreal is actually an understatement. I thought I would cope okay but as we turned the corner into the clinic, tears began to fall. It felt like when we turned the corner in the car at Holly's funeral to see all the people waiting for us. It is an odd feeling of needing to get there as it is so important but also a fear of reality. Luckily the waiting area had changed since we had last been and I was placed in the gynae section so that we didn't have to sit with any pregnant ladies. It was a small thing but my god it helped.
Our consultant came and got us and we sat down for what would be an hour and a half appointment. I had no idea what to expect, I just hoped and prayed that we would get some answers. We already knew that part of Holly's heart was bad due to investigations in the pregnancy finding out I carry Anti-Ro and Anti-La antibodies. Brutal little bastard antibodies which attacked her heart and had caused complete heart block. But we didn't know why the rest had happened. Part of me was hoping that something was seriously wrong with her. So seriously wrong that it would have taken the pressure off it being my body had that attacked her.
Something was seriously wrong with Holly. It was the heart block that was serious. And yet, up until that appointment I don't think I had really grasped that fact. I still hadn't realised how deadly heart block could be. I needn't had worried about anything else being wrong with her as the heart block alone was enough to kill her.
The post mortem found complete destruction of the cardiac conduction system. Holly would have never survived. Her heart would have continued to slow until one day it would have just stopped and I would have probably gone into a very quick and scary labour at home. We were too early into the pregnancy to have saved her as she wouldn't have survived being born that early. The reality is a harrowing lose/lose situation. The only comfort I have is knowing we did the right thing. We didn't prolong her weak heart struggling to pump. We let her go peacefully, comfortably and with our love.
They found that the heart muscle had started to calcify. It was dying and it was breaking down. Other structures in her heart were thickened and scarred. My antibodies had also attacked the attachment of Holly's placenta to my uterus. They too were breaking down. Our sweet Holly never really had a chance of life.
The cause was the antibodies. Something which I never knew I had. Something I wish I never knew about. It's likely that the antibodies are a mutation from an illness or even from a vaccine but as I have since been diagnosed with Sjogren's syndrome (in which they are related), god knows how long I have had them for.
The rest of Holly was perfect. Nothing genetically wrong and nothing structurally wrong. We know this because we read the entire report. The entire report which details what cells they found on what organs, how much her brain weighed and how her little ovaries had been seen. A report which hides nothing and which the details have been scarred in to my brain forever. No parent should ever have to go through this.
We talked about future pregnancies. Before having Holly, I would of had a 1-2% chance of this ever happening. 1 in 20,000. But now that it has happened I have a 20% chance of it re occuring and that is just so bloody scary. This was the 5th consultant to say that she only see's this once every 10 years and so she has referred us back to St Thomas's to see a specialist. As it is so rare and so recently discovered, the information that they have for medicine to help prevent it happening are limiting. There simply haven't yet been enough ladies to go through this for them to be able to have conclusive evidence of what may help. So far, trials have included taking steriods, which seem to show some small benefit and in America, having three weekly intravenous immunoglobulin which shows unclear results. They are the only options.
Scarily, heart block isn't picked up until between 16-24 weeks either. So any pregnancy we have won't have the 'all clear' for a long time. In all honestly, I don't believe any pregnancy can ever have the 'all clear' although I wish I had the naivety to believe so. It is incredibly scary and the fact of 20% 'odds' being in our favour give zero reassurance. After all, the odds of this happening in the first place were so incredibly slim.
Needless to say we are both exhausted from this. The last week has been hard as we try to come to terms with all this information, what it may mean for the future and of course just feeling so overwhelmingly sad for our poor Holly. The only comfort we have is knowing that we DID do the right thing but for me, it is so hard to come to terms with the fact of my immune system being the cause. Of course I didn't intend for it to happen and I know that but until your body has killed your baby it isn't really something that anyone can relate with. It is just something I will learn to live with.
I hope this post helps someone one day. I couldn't find anyone at the time of us going through the diagnosis who had been through this (which I guess means the occurance rate is true!) I had people to talk to who had lost a baby and terminated a baby but I really wanted to talk to someone who had this exact diagnosis. It is quite amazing how alone you can feel despite being surrounded in a network full of love, hope and good intentions.
We are both a little broken right now. But as with how our new life seems to go, one day soon the grief will ease its squeeze on our chests and we will be able to smile for a short time. Until then we are preparing ourselves for more appointments and more uncertanties. I am so greatful for medicine but I wish this wasn't the cause of my gratitude.
So we keep watching the clock, I know the ease will come soon.
On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.