Tommy's guest blog, 02/09/2016, by Rebecca Kearns
A molar pregnancy is a very rare complication of pregnancy which can happen when something goes wrong in the early stages of fertilisation that means the baby and placenta don’t develop properly.
Whilst all miscarriages are distressing, a molar pregnancy is unusual in that it brings anxieties over many months as you wait for confirmation that any abnormal molar cells are eliminated and your hormones to return to normal.
The process of finding out how things are progressing stage by stage can feel like a series of blows and the wait to find out how your body is doing and when you can conceive again can be stressful.
Rebecca Kearns and her husband are all too familiar with this anxious wait, since being told that their early scan was showing no signs of a viable pregnancy three weeks ago.
Rebecca’s doctor told the Kearns that that their loss “could be a missed miscarriage, a molar pregnancy, or an ectopic pregnancy” and have embarked on several weeks of tests and checks to find out what kind of miscarriage Rebecca suffered.
Here is their story
Three weeks ago today I had just come out of my first midwife appointment of my second pregnancy. I had mentioned that I'd had a bit of bleeding over the last few days. The midwife suggested an early scan, to put my mind at rest.
I felt a flicker of nerves, but told myself I was being paranoid.
My scan was booked in for the following day, and I told myself that this was a good thing - I'd get to see my longed-for second baby sooner than I thought.
The scan showed no sign of a viable pregnancy, and the three weeks that followed have been the most terrifying, isolating, and heartbreaking period of my life.
1 in 4 pregnancies ends in miscarriage, and yet until you are unlucky enough to experience it, nothing can prepare you for the sickening, dizzying, exhausting waves of emotion so intense that sometimes, you will feel like you're drowning.
In the last three weeks I have had three internal scans, seven blood tests, and one operation. I have seen more medical staff than I can count - sonographers, phlebotomists, anaesthetists, registrars, doctors, nurses and consultants, across two different hospitals.
I have been told so many different things at each stage of the process, each one worse than the last, until finally the news last week that rather than being a molar pregnancy, as was initially suspected, it is more likely that the loss of my baby was due to a "normal" miscarriage.
It puts into perspective how horrendous this experience has been that the news that I may have been having a "normal" miscarriage felt like cause for celebration
Having had my operation last week, I am now awaiting the results that will determine what type of miscarriage I've had.
If it is determined that I had a "normal" miscarriage, then the process of healing, both mentally and physically, can start quickly. If the results show I've had a molar pregnancy, then the road to recovery will be longer, harder, and more complicated.
The waiting is hard, but it is easier now that the operation is over - one of the hardest things I've experienced over the last few weeks was having to deal with the pain of a miscarriage, alongside the fear of having surgery.
It has been like a black cloud hanging over every thought, every conversation, every cuddle with my daughter.
Many times over the last few weeks, a Bob Dylan lyric has lodged itself in my head: "They say the darkest hour, is right before the dawn".
There are so many darkest hours during a miscarriage that you feel the dawn may never come.
When the sonographer told me that there was no sign of a viable pregnancy, I thought there was no way I could feel any worse, but I was wrong.
When I was told I was probably having a molar pregnancy, and we wouldn't be able to try to conceive again for 6-12 months, I thought I couldn't feel any worse, but I was wrong.
When I was told I would have to have an operation, to remove the "retained products of conception", and I felt a fear like I've never experienced before, I thought that was the worst I could possibly feel, but I was wrong.
When, on the day of my operation, I had to wait 10 agonising hours before going down the theatre, I thought that was my lowest point, but I was wrong.
Then I thought surely - the conversation we had with the nurse before I was discharged about the disposal of the remains of our foetus (would we like a burial or a cremation, did we want to write in the book of remembrance?) - surely that was going to be the lowest point.
The darkest hour actually came over the weekend, three days after my operation. I had stayed in hospital overnight and had come home to a three year old with chicken pox (spot count - 187).
A three year old with chicken pox would be a challenging prospect at the best of times, but when already drained and exhausted and trying to recover from surgery - it made an unbearable situation, even worse.
The three of us were confined to the house all weekend, she not well enough to be taken out, and we too exhausted to even contemplate it. I felt trapped and utterly hopeless.
My husband and I have had a very tough year, and when I found out I was pregnant, it felt like the clouds had parted. I felt above all else - hope, hope that things were finally going right for us. The miscarriage has taken that hope away.
Next time I see a cross on the pregnancy test, I won't feel hope, or joy, or any of the other things you're supposed to feel when you finally fall pregnant after months of trying.
I'll feel fear. I'll be terrified that every time I go to the toilet, I'll see blood.
I won't want to share our news with anyone until after the scan. I will know from this experience that as soon as your pregnancy feels real, so does your unbearable sense of loss if anything goes wrong.
But on Sunday night, in the hours of talking and crying, I realised that if this was our lowest point, even a small change would have a positive impact.
The first positive change would be our daughter feeling better (and by extension, sleeping better), and getting back to her normal routine so that I (and we) could actually start to recover.
By Monday morning she was feeling much better. We had all slept, relatively well. Things felt a little less hopeless.
It is now Tuesday morning. Our daughter is back at pre-school. According to my husband she ran into the classroom, shouted "I'M BETTER!" and proceeded to pull up her dress to show everyone her spots (front and back).
She is the reason we keep going, the reason we have to get through this, and the reason we will come out the other side. But for now, for a few hours each day at least, we have to concentrate on healing, recovering, living, without first being parents.
On Sunday night I told my husband I'd lost all hope of things going right for us.
The last 12 months, starting with my mother-in-law's death last September and finishing with my miscarriage this September, have beaten both of us down to the point where I'm not sure we have any fight left.
But my realisation on Sunday was right - my daughter getting better feels like a small win, and has already helped me to feel more positive.
There is still a long way to go. I still don't know what type of miscarriage I've had. I know it takes my husband and me a long time to conceive, and I know the part that stress plays in this.
I know that because my most recent experience of pregnancy is now one of loss, my anxiety at miscarrying again might preclude us from being able to fall pregnant in the first place.
I know that I feel guilt at my failure to have nurtured the life that we created - a guilt that nobody could possibly understand unless you have experienced the death of a life inside you. For the rest of my life, I will know that my pregnancies will outnumber my children.
But I also know that I was wrong on Sunday, it is not hopeless.
I may not be running into the room shouting "I'M BETTER!" any time soon, but with each small positive, each tiny win, each good thing that happens, maybe I'm getting closer to feeling, if not better, then at least better than this.
It is important to remember that you’re not alone
Please remember that you are not alone in your sadness or anxiety. Miscarriage is one of the most common reasons for baby loss but also one of the least understood.
If you have suffered a molar pregnancy, it doesn’t impact on your future fertility and you still have every chance of going to have a healthy successful pregnancy.
The risk of another molar pregnancy is only about 1-2%
There is no right or wrong way to feel after a miscarriage. It is important to be kind to yourself and take the time you need to recover.
Our midwives are just a phone call away if you need to talk about the way you are feeling or seek support and advice. They are available from Monday to Friday on 0800 0147 800 and are there to help you in any way they can.
If you’re concerned about the prospect of molar pregnancy or want to read more about the condition you can do so at our molar pregnancy information page here.
If you are struggling emotionally after a miscarriage then please use our support pages on coping after a miscarriage or get in touch with us, we are here to support you in any way we can.
If you would like to read Rebecca’s full story and how she and her husband have coped over the weeks then you can do so at her original blog post here.
Our journey is ongoing but I hope maybe it can help people to see that it's not all bad. We only experience grief if we loved and that is to be celebrated!
What do you say to someone who's just lost a baby, even if it was never and could never have been a baby?
Certainly not things like "maybe it was for the best" or "Maybe your not ready for another just yet".
I don’t think we spoke much; we just held hands and looked at each other every now and then with a worried smile, scared for each other and for ourselves.
I love midwifery and rarely take it personally that seemingly everyone in the world I meet has a baby, but this time I needed a few days off work.