The Reality of Miscarriage

One in four. Those stats followed me around. Given I'm a 'numbers' person (whatever that is), I had consciously considered the option that my first baby wouldn't grow to full term. I know a lot of girls who have had healthy babies. Three in my immediate circle who haven't miscarried. That means I'm up next, I'm that one out of four. The statistics around miscarriage, followed me around.

Generally though for the duration of our first pregnancy, it is full time bliss-out mode. Its is all about your bursting heart, your partners bursting heart, your hopes and expectations and all the excitement around what growing a baby signifies. Like waiting for Christmas when your 4yrs old - but better.

So when you're at 14 weeks and just about ready to tell the whole world you and your husband are having a baby - and when you go in for your second scan, and the screen comes up grey, dark, still.... Christmas is cancelled. No feast, no joy, no happy family time. And no present.

Prior to this, there was no way there would be any other option, except a happy healthy baby entering your world in 6 months time. Right? You have to make it past 12 weeks, once you do the baby is healthy right? Right?? Wrong.

This is your second scan, so you know what to expect, you know what comes up on the screen, and you know its fairly immediate - wand on tummy, image of little thing on screen.

But the monitor is blank. There's nothing there. Everyone looks harder, a paler grey blobs comes in to view. Your heart smashes.

From your first scan at about 8 weeks, the monitor was jumping, alive with blue and red shapes bouncing around the screen. So much activity, in your memory you recall how alive that 8 week scan looked. Literally, alive.

Not this time. The Doctor nervously fumbles around muttering that the monitor must be taking a while "to warm up."

Its so clear to you whats happened. You are not surprised. Some weird hormonal things happens and you don't even feel shocked. Its ok Doctor, its alright. I hear myself say.

I look over at my husband. He's white, stony, slight grey almost. Tears welling up in his beautiful blue eyes. Now that's the face of a wonderful human, in absolute shock.

Why is he hiding? I say nervously laughing at my belly, in some vein attempt to lighten the mood. I have no idea why though - this is not light. This is shit, shitty dark, black, blacker than anything you know. As the ultrasound wand searches around my tiny stomach, the blackness on the monitor reminds me of this fact. The big black empty screen is a telling image, there's nothing out there. Nothing at all.

It's ok Dr, I think we know what's happened.

He is apologising profusely. Its not your fault Doc. Talk to me about next steps. Lets map our way out of this building at least. Get us out of here. Tell me what to do next week. Tell me who to see, where to go and how to move forward. I'll need surgery, baby is not getting the message that its time to come out. Tell me what to do and tell me quickly. I have to see how this be resolved, I need the details and I need them now.

So Hospital appointments are made and an anesthetist is booked. Paperwork is filed.

And that's it. Its done. You have had a miscarriage. The baby is no longer growing, you are no longer giving birth by the end of the year.

No one can ever be prepared for this feeling. It is actually horrible. Nothing anyone does or doesn't do will change how you feel about this time in your life. It's unlike any other type of grief, because I think its more about losing something that could have been. Losing a dream.

I'm not going to tell you its all ok, because it isn't. Its horrible. I didn't get off the couch for weeks (did not move) and I couldn't sleep for about a month. I was terrified there was something wrong with me. But what I can say is its not you. Its all of us. Most of us will miscarry. Fact. Shitty horrible f$%ked up shitty poo-bum fact. All it shows is that you're normal. Just like the rest of us. Your body is practicing getting the growing medium just right, for when your forever baby arrives.

Honestly though that wasn't a good enough reason for me. I don't expect it to make you feel like its ok either.

Our little girl had Downes Syndrome. She's stopped growing at about 9 weeks. Stayed in there for an extra 5 weeks. So when I was booked in for surgery to get her out, I opted for the full testing to work out what had happened to her. It was important to me to know how this had happened. Not everyone will feel like this, by way of example my husband didn't want to know. He wanted to move passed this experience and not dwell on the details. So much so, even when the results came back in, he asked me not to tell him. So I didn't. It wasn't until over a year down the track that he asked for me to explain to him what had happened to our first baby girl.

I've spoken about feeling lucky before. Once I got the pathology letter, I had an overwhelming reaction. One of relief.

Relived that we weren't faced with that impossible choice. I have the utmost respect for parents who chose life, however I am also very proud to live in a country where we are given a choice. I am pro choice. Each family unit is a different case so having a choice means all of us can chose what suits our specific situation the best. Every day both with our baby or without her, I would have wondered if - whichever choice we made - was it the right one? I can't tell you what we might have done, I feel like I would have kept our little girl. One thing I've gleaned from this life of mine though, is not to make any statements about how I may act in relation to a particular subject, for which the depth of emotion relevant to said situation, I do not fully (or even partly) understand.

Full of relief (and a clean bill of health with regards to fertility, chromosomal normality and a very healthy husband) the future seems so achievable, so close even. And I bumble along full of relief, thanking my my body and our baby girl's body, for recognising she wasn't put wasn't put together right. I'm so grateful to our bodies for taking that shitty, heart wrenching, complicated, impossible choice away form us. I focus on my health and recovery from surgery. And we crack on with life.

Four months later and we are pregnant again. All our hopes and dreams are back on the table. We are okay, as a couple, as healthy humans. We are going to be so fine. We are a little more ginger and cautious this time so don't escalate to full scale excitement, but over the moon just as much. We are back in business!

I've never been one to get cramps before so when I started cramping I was a little concerned about what it meant. I happened to be chatting with my sister in London, she said that cramps can be normal, to go and see the Doctor to check everything's ok. But by that night, my cramps were so bad I got up out of bed to have a shower to try and ease the cramps.

Six weeks since we found out we were pregnant again, and I'm in the shower, talking myself off a ledge and convincing myself everything is alright. Hoping the warm water will make everything better.

What happens next is nothing short of a crime scene. I am not a squeamish person, but I have never seen an amount of blood that large before.

It doesn't stop, so much blood, so much tissue. I think I screeched because my husband ask me if i'm ok.

No, no no no.

Unfortunately when it is you, you know as it is happening (like with the first miscarriage) as the person carrying the baby, I think you can tell when it's not right. Plus you're a vaguely intelligent person, there was no way that amount of blood and tissue being lost, would mean that a viable baby is still left inside.

This is when actual terror sets in. There must, quite clearly, be something so fundamentally wrong with you. Your whole life crumbles. And there really isn't that much that you like, even in the slightest, about the world anymore.

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We still don't have children, but shortly after the second miscarriage, I tested positive for the JC Virus. I also had picked up Tuberculosis somewhere along the way, so it was decided I would start Lemtrada. I've written about my Lemtrada treatment, and have spoken so positively about it. But what I didn't include was how all I could think about when my neurologists suggested this treatment pathway, was that it is now a 2 year long wait to have children. That is the only message I recall from that consult. Everyone in the room played down my concern about having a baby and I was forced to hide my disappointment (heartbreak). My health is the most important. Yes. My health is the most important. Saying it out loud back to them I'm pretty sure i had my fingers crossed. I didn't care about my health. I want a baby.

After deciding to go on the Lemtrada treatment cycle, I drag my husband around to IVF specialist appointments, contemplating freezing eggs. The fear of being an extra 2 years older than what I already was, paralyses me with fear - being in my late 30's at the end of Lemtrada? Fertility fear. To combat my terror my husband very supportingly goes along with idea we might freeze some embryos, so once I'd finished Lemtrada we could get straight back in to growing a baby.

But, what happened instead that was in my obsessive quest to better our chances post-Lemtrada, I had us both tested for everything and anything. Such a turn of mood when our results came back really positive, super-high fertility counts, chromosomal-ly standard (the risk of another Downes baby no more or less likely than the first)!! Thank you IVF but we will retain our thousands of dollars and try the free way when I'm able. Yee-ha!!

Fast forward to today, and as I'm writing this I get so excited, because I know that in the next 6 weeks - we will be cleared to start trying for a baby again. And the clouds start parting in my little brain.

Its a horrid, long, full-of-set-backs type of journey, us sick people have to endure on our path through life. Because of this, remember - we are good at coping with set-backs yeah? We're seasoned for this type of stuff. You will cope better than you think you would (ignore my couch potato episode, it's also a favourite past time too so might not necessarily represent me being down...) This is just another knock, you will get back up. Like you always do.

I can say with some amount of certainty, there will be a day when you wake up, even still lying in bed, when you realise what the date is. You have this excited feeling - you are out the other side. You have made it. This set back, this one - it is OVER! You are going to be able to start trying for a baby again after all. The excitement about this opportunity... Christmas is back on!!

The day will come when you're life changes in a way you have been waiting, literally, years for. We don't have kids yet, so I'm not going to gleefully post about how we got our baby. What I will say is get tested for everything. Give yourself peace of mind you are 100% normal. If it turns out there are some abnormalities, talk to your neurologist about family planning, they will help find you a way that is compatible with your treatment regime. See an IVF specialist. They will talk with your medical team and vice versa, to work out a pregnancy plan that keeps you and baby safe. Just like modern medicine keeps us functioning, medical technology can also find you a baby.

Lastly, and speaking from first hand exposure to this, you have to trust in the timings of why things get taken away from us, when they do. Don’t lose site of the fact that these things we lose, when they do come back around, it's because you're physically better, stronger, healthier. And ready for them this time.

If this is what you want, don't give up xx