Miscarriage: to know or not to know why

Screen Shot 2015-12-07 at 2.38.50 pmWhen I was a kid, I was full of questions. My favourite thing to do was to ask, “Why?” When I was about five, I remember being in a shopping centre with my parents and sisters, the eldest of whom was pushing my niece in a pram. We had been riding the escalators all day and I kept seeing these big read buttons at the top of every escalator. I asked what they did but, given we were in a hurry, I was told not to worry about what they did because it was not important.

It was important to me though so at the top of the next escalator, when my sister was halfway down with the pram, I pushed the button.

The escalator immediately stopped, almost throwing its occupants off in the process. Dad then had to help my sister carry the pram down the remainder of the now-frozen escalator. Everyone was pretty mad at me.

I didn’t get it. Why were they angry when all I wanted to know was the answer to a simple question?

Of course, the button was an emergency stop button but I didn’t realise that at the time and I wasn’t satisfied with being told that I didn’t need to know the answer to my question. I needed to know.

I know my questioning nature drove my parents insane at times but, unfortunately for them, it is something that has stuck with me. For the most part, this has served me well but sometimes it causes me to create more pain for myself than is necessary.

In the case of wanting to know why I miscarried earlier this year, I nearly drove myself insane trying to figure out what caused it and how I could have avoided it or, at the very least, how I could ensure it wouldn’t happen again.

The doctors, nurses and midwives all said the same thing: sometimes we just don’t have an answer. I couldn’t accept that I would never know what caused our baby to die so suddenly just days after seeing their heart beating strongly, but it looked like that was exactly what was going to happen.

That was until last week when I went to my GP to get an iron test done. Those who know me well will be familiar with my struggles to keep my iron at a healthy level. Anyway, he was going through my history and saw that I never received the results of a test I requested when I was pregnant to find out if I had a mutation or defect of the Methylenetetrahydrofolate Reductase gene. The MTHFR gene for those who prefer to not overcomplicate things. Or the Mother F*cker gene, for those in the natural medicine field who know the havoc that mutations to this gene can cause.

What does the MTHFR gene do, exactly?

The body can’t do too much with folate in its original form, so it needs to convert (or methylate) it into a substance that it can actually use, and that substance is called L-5-methyltetrahydrofolate. The MTHFR gene is responsible for this conversion.

The MTHFR gene can be defective in a couple of different ways, with one mutation being known to increase the risk of blood clots, especially during pregnancy.

For people with this type of mutation (the heterozygous version, for those who are interested), miscarriages are common. It is thought that a blood clot forms in the placental blood vessel, causing the baby to be cut off from nutrients and subsequently causing you to miscarry.

This is the mutation that I have.

I think this is why our baby died.

Of course, I know all too well that there are no guarantees in this life, and there is every chance that something else caused the miscarriage. But there is something strangely comforting in thinking that I might have found an answer, even though I’ll never know if it is the answer. It gives me the opportunity I’ve been searching for to see what I can do to try to stop this from happening again. It gives me a direction to start with rather than flailing around in the dark, hoping I’m taking the right supplements and getting the best treatment. As anyone who is dealing with fertility issues – or any health issue for that matter – will tell you, having some information is better than having none.

The science is pretty new around all of this, which means there aren’t many prenatal supplements that include L-5-methyltetrahydrofolate, or even its precursor – folinic acid. My doctor isn’t even sure about what the best approach is!

After trawling my university’s scientific research database to read about the few studies that have been conducted in this area, it looks like the best thing I can do is take a supplement that includes L-5-methylfolate. I’ve found one that looks pretty good, so I’m going to give it a shot when we do decide it’s the right time to start trying again.

So instead of doing nothing and just hoping for the best, I’m trawling my uni’s scientific research database to find answers and I’m determined to get to the bottom of this.

I’ll never stop asking why.

Laura xx

Note: As always, I’m writing about my own experience. I’m not a doctor and while this post might give you the information you need to start your own investigations with a health practitioner, it should not be construed as medical advice.

Life and death and resurrection

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A quick note before we get to today’s piece:

This is the hardest, but most important, thing I’ve ever written.

It has been sitting in my drafts section for some time, with no reason not to be posted except that I couldn’t find the courage to do so.

Two initiatives have taken place over the last two weeks that have helped me to feel like it was finally the right time share my story. Last week was Mental Health Week and I was reminded that everyone is dealing with something hard in their life, and keeping my struggle a secret helps no one, especially not me. Then, yesterday was Pregnancy and Infancy Loss Remembrance Day, and as I read article after article about women struggling through a mountain of grief in private, I realised that the more people who share their experiences about infant and pregnancy loss, the less this topic will be seen as taboo. It is my hope that by sharing my story it will help another woman who has gone through this loss feel less alone. You are not alone. The level of grief you feel is valid, even if society tells you that it’s out of proportion with what they expect from the death of a life they never even knew existed.

 

“Resurrection means that the worst things are never the last things.” – Frederick Buechner 

When I first counted the dates, and counted them again, I didn’t admit to myself what a difference one week could make. But I drove to the shops anyway, to pick up the test anyway, because what were the chances anyway.

Then, as I stared at those two little lines I held my breath for all of eternity, blinking and hoping and not admitting that the impossible could be possible. Pregnant, the lines announced, whispered, shouted.

With shaking hands and hearts in mouths, we hugged and hugged and kept checking that those lines were still there as we basked in the bliss of our new names: Mama and Papa To Be. A mum and a dad. A baby would make three.

I said I don’t know how to do this and he said we’ll figure it out together, this perfect new reality of ours.

And so head-first we fell into what we thought was a given. They provided us with urine tests, blood tests, leaflets, a due date. And I did not admit to the fear that had crept into the corners of my heart that while our due date would come and go, just like all of time does, it would not look the way we wanted it to.

As we gazed in awe at your tiny flickering black and white heart beat, our hearts started beating in time with yours. That’s your baby, she said. Everything looks perfect, she said.

Except it wasn’t perfect. Not even close. Or maybe it was and this is just a different, more painful kind of perfect than the version we had imagined.

When my world turned red and it just wouldn’t stop, I squeezed shut my eyes, started building a wall around my heart, and whispered no no no to a god that wasn’t listening.

For a whole day and night and day I didn’t admit what I knew to be true. I couldn’t admit that I was losing you.

I tore apart my body in search of the strength I knew I had to find to utter those terrible, awful words that never should have to be said. I didn’t admit that I was too scared to call the midwife, too scared to hear what she would say but I knew not admitting would not be enough to stop this train that was determined to derail itself.

This happens all the time, she said. Lots of women experience this and they go on to have healthy babies, she promised.

But promises are just words and, oh baby, words can’t save a life. Can’t save a mother or a father. Can’t save a future imagined either.

And so we drove or walked or swam through an ocean of grief to the hospital, and all the while I hoped I could find the courage I needed to lose sight of the shore and swim into this new world that I didn’t want to belong to.

The pain spread from heart to my soul to my body to you. It blurred the white walls and white bed and white everything, and I couldn’t admit that even as I begged for the morphine that entered my blood I wanted to scream at them to stop because if I didn’t feel pain how would I know you were ever even real.

I shut my eyes or maybe they shut themselves to block out the feeling of cool gel on my skin and listened instead to the screaming silence that filled all of the spaces that were once filled by you.

I think I should get the doctor, she said. What we are seeing is consistent with a miscarriage, he said. We can’t see a foetus, they said.

My baby is gone my baby is gone my baby is gone.

You have options, she said.

Options?

How could I have options when the only option I wanted is no longer an option? Surgery, a pill, just wait it out. These are your options when you have no options.

I opened my eyes to another white ceiling, to murky voices and a second of normality before the memories crashed their way back into my heart, jamming themselves into every corner of this body I used to trust.

Into this world I trusted.

This new reality is not the one we wanted but maybe, just maybe, one day we will be able to see that it’s exactly the one we needed.

Some lives are very long, and some are very, very short but they all leave their mark. And you, our beautifully imperfectly perfect baby, have left your mark all over our hearts.

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” – Helen Adams Keller

 

If you know someone who you think needs to hear this message, I would be so honoured if you shared this with them.

Laura xo