Every time I hear, say or think the word GRIEF, the vison and feeling that envelops me is darkness, grey and gloomy.
I can almost feel the cold and wet from hammering rain, shivering, looking around and seeing nothing but dead and damaged tree trunks, cracks in the ground. But above all the feeling of loneliness.
I’m writing about grief because there is one time in my 35 years that I experienced true grief and this was when I suffered a miscarriage. Miscarriage itself is what I would call an ‘umbrella term’. Loosely it is applied to a pregnancy loss but scratch beneath the surface and you will come across terms such as missed miscarriage, chemical pregnancy, pregnancy of unknown location, ectopic pregnancy, molar pregnancy, TFMR (termination for medical reasons). This is not an inclusive list and I am by no means an expert but sadly two of the terms on that list I have some experience of and it has left a permanent scar on my heart and my mind.
It was 2018.
I was content and happy with my life although I felt something that I never thought I would, the longing for another baby. Before meeting the absolute love of my life in 2016 I had never entertained the idea of another child. P was getting older, I was happy and enjoying the new direction my life was headed in, I was feeling good. Then I met him and all those things that didn’t really mean much to me anymore, like marriage and more children were suddenly back on the table.
My epilepsy was finally under control after 18 years, just like he promised me it would be. I had my provisional drivers’ licence and was starting driving lessons. Life was really starting to feel like a bit of a fairy tale to me.
In June I had a gut feeling that I may be pregnant. I tried ignoring it, but it niggled at me for days until eventually I went and brought a pregnancy test which to my surprise came back positive.
I was stunned initially then the excitement flooded me, and I began to see this whole new life. I was going to have another baby! Because the circumstance around my pregnancy with P were less than ideal, I made up my mind that this time I was going to enjoy every minute of it. I would go to the classes and share all those special moments with the man I loved. This time was going to be different. I made an appointment at my doctors’ surgery as I knew that I would need a referral to the midwife and that I would also need an emergency referral back to my neurology consultant.
As a woman with epilepsy taking anti-epileptic medication, it meant that I would need a prescription of a high dose of folic acid that could not be brought over the counter and then extra monitoring appointments due to the added risk of certain conditions with the baby such as cleft lip, spina bifida and heart conditions.
It was after this appointment that the stress and anxiety began and never left.
The doctor that I saw did not refer me properly to my neurologist, it was a regular referral instead of an emergency so the appointment I received would not be until the baby was due, so I had to make some calls and get this amended. Then the doctor would not prescribe me the 5mg of folic acid that I needed instead asking me to just take an extra tablet of the 10mcg that I was able to buy at the chemist.
The final and sadly not least disturbing moment of this appointment was when I was asked if I needed anything else? I needed to know how to contact the midwife as it had been 11 years since I last done this, and things had changed so much. The doctor did not know how to refer to the midwife and needed to go to the reception desk and ask someone.
I spent the rest of that week calling the surgery every day having to solve the problems that this appointment caused. By the Friday I had finally got the 5mg of folic acid and the team at the hospital where I saw my neurologist had managed to sort out the correct appointment for me and I was eagerly awaiting to hear back from the midwifery team regarding my first appointment.
But now I felt deflated. This had been such a battle to get just basic care and my anxiety was at an all-time high. My friend noticed that the excitement had left me and was doing all she could she reassure me. She was genuinely concerned and begged me to relax, reminding me that I deserved this, this was the universe giving me the greatest gift. But something did not feel right. I was already feeling anxious but now there was something else that was niggling at me.
I would nod and agree but sadly those words of encouragement would come back to haunt me. As kind and well-meaning as they were I still get a pit in my stomach hearing, writing and seeing them now. You deserve this.
It was now the following weekend and on the Saturday morning I got up, made my usual cup of tea and sat on the sofa. I began scrolling on my phone googling what the best car seats were before then changing my search to stomach-ache in early pregnancy. I knew that some aching was normal but something within me would not allow me to put the phone down as the ache I could feel was continual. By 8pm I had spent pretty much the entire day torturing myself, so I finally gave in and called the Early Pregnancy Unit. They were closed but I was advised to attend accident and emergency if I was concerned.
At this point I was in a state of controlled panic. I had my stoic face on and appeared cool and calm but that awful feeling in my stomach was pushing the tears to the back of my eyes.
At the hospital the woman behind the reception desk looked sympathetically at me and tried to reassure me as she herself had the same thing happen to her and everything turned out to be fine. Everyone that I encountered that evening was the same. So kind and reassuring but it was wasted on me.
With every sample given and explanations of what I had been feeling I was slipping further and further into darkness. The doctor who was checking me over seemed positive and asked me to return on Monday when the unit would be open. I could receive my test results and be scanned to make sure that everything was ok.
Back at home I spent the next day trying to hold back tears.
I felt sick with nerves and all I could think about was my baby. I would try and communicate on some level with them, begging them to be okay and telling them how much they were loved. The thoughts then turned to a repetitive ‘I love you’ that just replayed in my mind whilst holding my stomach protectively.
On Monday we went to the hospital and my stoic stance was beginning to crumble. There was not a lot of space at the early pregnancy unit, and we shared the waiting area with another woman and her partner. They were both cheerful, chatting away to each other and this tore at me because I now felt the urge to cry more than ever.
I could not lift my head for fear of catching their eye as I knew that I would not be able to hold it together much longer. I was shaking where the nerves had completely taken over, so it was almost a relief when I heard my name being called.
We walked into the darkened room, and I was shown to a side room where I could take my trousers and underwear off and given a sheet to wrap around myself. Once I was settled on the bed Paul and I gripped hands. The tightest we have ever held each other. As I took a breath preparing for the internal scan, I had a brief moment where I considered that everything may still be ok but this was short-lived as after what seemed like a lifetime the words ‘I’m sorry’ left the mouth of the sonographer.
Any ounce of self-control that I had left was gone in that moment.
The tears just flowed freely and there was no end to them. To then add to the shock and distress of the situation we were informed there was what appeared to be a ’12 week mass’ alongside the ‘6 week sac’.
Stunned out of tears for a moment I was trying to understand what was being said to us. Had I been pregnant before then managed to get pregnant again? What was happening? Was this ’12 week mass’ a baby and what of the ‘6 week sac’?
A nurse came in at this point to help us out of the room so we could go somewhere to discuss what would happen next and as I stood up it was like a flood gushing out of me. I looked down to see blood trickling down my legs and nearly fell down with the shock. With the nurse and Paul each taking an arm I was half carried into the toilet.
I will never forget the look of horror on the face of a pregnant woman holding the hands of her toddler as I was hurried past. A sight I am sure she really did not need to see, and I did not need to be remembering.
After helping me to get cleaned up and checking that I was steady on my feet the nurse led us to a consultation room. She was so kind but no matter how kind she was nothing was going to make me feel better now.
She explained that I would need to come back in a couple of days to see a consultant because there was a possibility of this being a molar pregnancy. We had no idea what this meant but the nurse reassured us there was nothing we could do now but go home and rest. Having to leave the hospital without a scan picture but in its place a nappy sized sanitary towel, a couple of specimen jars and some cardboard toilet inserts was hard. We were praying that we wouldn’t bump into anyone as the entrance/exit we were using was the same one for people coming in and out of the maternity wards.
Once at home we began our grieving processes. Paul dug up the garden and I spent my time on the sofa crying and searching through Facebook groups to join where people would understand what I was going through. I also went against the advice of the nurse and googled ‘molar pregnancy’ and I really wish I hadn’t. It did not make for happy reading and was frankly scary.
In the very worst case scenario I could end up receiving chemotherapy as a treatment so with these thoughts, on top of the grief and trying to process what was going on I was unable to speak or communicate with anyone on any level. I think the worst part of this process was the loneliness I felt in that no one could understand what I was going through. I had no one to speak to about what was happening.
My well-meaning friends and family were trying to be supportive saying things that came from a place of love but would usually just make me feel worse. If you have been through similar you know the sayings: * at least you can get pregnant * You have P some people don’t have any children * You will get pregnant so easily after this it makes you more fertile * You never know it may still be ok….
It felt like we had been waiting an age by the time we got back to the hospital.
We were both drained. The tears, grief, worry and confusion were all taking their toll. But the consultant was actually a breath of fresh air, so calm and ready to listen and answer all our questions.
It turned out the ’12 week mass’ may have actually been some ovarian cysts but where our ‘6 week sac’ was concerned sadly there was nothing left to say. All we will ever know is that baby was not developing properly.
Now I think about it I am not even sure that our baby was alive at this point? But due to my high HCG levels and the development of baby the possibility that I was experiencing a Molar Pregnancy was very real, so I was invited back to the hospital the following day for surgery.
My memories of the events over the next few days are frankly horrific. The surgery took a great burden off of me as I did not have to take any pills or wait for nature to take its course. Sadly though on entering theatre my lasting memories are of a thoroughly unsympathetic person who asked me to confirm the reason for surgery. I could not bring myself to say it and broke down in tears instead, so they rolled their eyes and asked me to confirm if I was there ‘for the removal of the result of conception’. This will unfortunately never leave me.
Everyone we had contact with was so sympathetic to what was happening and this one person shaped the whole experience for me by being plain cruel. Medical language was not designed to be compassionate; I understand that. But as a person, a functioning human being, have you ever discussed someone’s pregnancy and referred to their baby as a result of conception? A sac? A mass? A blastocyst?
Sadly, words can cut so deep and are very likely not to be easily forgotten. The final devastating blow came a few days after my surgery. All my fighting for prescriptions and appointments had paid off and through the letterbox I was getting letters from midwifery, neurology and the surgery as by now I had raised a complaint due to the treatment I had received at my initial appointment.
I had to sit with each letter and call the contact numbers provided and explain to each person on the end of the phone that I will no longer need the appointment thank you as I have now lost my baby.
It really felt as though I was being punished as each day seemed to bring a new level of despair and fresh waves of grief.
Although this experience has shaped me and will never be forgotten I can say that I have managed to find some sort of peace with it all.
I initially tried to move on too quickly which resulted in me having to turn to counselling. When I could not feel the benefit of counselling, I found Reiki and after a few sessions I can honestly say that the dark cloak of grief that was smothering me had begun to lift. I wish I could say to you that after finding out that my pregnancy was not a molar pregnancy and then being lucky enough to go on to have our rainbow baby it has made me completely heal from our loss.
That would not be entirely truthful though.
There are still days that I sit and think about our baby. Sometimes when I am cuddling and comforting B I look at him and wonder what his older brother or sister would be like now. I have found comfort by having a rose bush that started life in a little pot. A gift from my friend on what would have been my due date which has now blossomed and is growing bigger each year. A little necklace with an amethyst crystal to represent what would have been our angel’s birthstone. I wore this necklace in a family portrait that we had done solely to let our baby know that they were included and will always be a part of our family. In B’s room above his cot a little crystal amethyst guardian angel looks down on him while he sleeps.
These little things bring me some comfort.
We all deal with loss and grief so differently so you need to do what feels right for you. If you are reading this and are affected by loss and are struggling you can find me as @thehighriskmum on Instagram. I am soon to begin hosting a support group in my local area and I also have a voluntary role as an ambassador for an early pregnancy loss charity so can point you in the direction of online groups and other charities that you may find useful.
We are all part of the same tribe. The one that no one chooses to be a member of but once you find yourself here you find that you are surrounded by so much love, support and understanding.
Even if you don’t feel comfortable sharing your story reading other people’s and seeing the advice they are receiving can be really beneficial so do not suffer alone.